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 barrieboy77
Joined: 5/17/2005
Msg: 1
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Any single parents of disabled children??Page 1 of 8    (1, 2, 3, 4, 5, 6, 7, 8)
Hello! My name is John. I live in Barrie, Ontario, Cananda and I'm a single father of a beautiful 3 yr. old girl named Lennon. She has Angelman Syndrome. Basically she has a deletion in one of her chromosomes, thus she can't talk or walk. She's a very happy girl with beautiful red hair and amazing blue eyes. I've had her with me since last October. Her mother and I broke up the month before, and after I left, began smoking crack. In one month, she lost everything! I take her daughter to see her once in a while, when I can track her down, but I always supervise the visit, just to be safe. I started this thread just to see if there was any other parents here in the same kinda situation, and if you have any thoughts on the matter.
 am70sguy
Joined: 6/11/2005
Msg: 2
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Any single parents of disabled children??
Posted: 8/8/2005 11:55:58 PM
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
 Chickenn
Joined: 8/8/2005
Msg: 6
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Any single parents of disabled children??
Posted: 8/12/2005 9:30:54 PM
i was out with my baby cousin who has the downs and i almost kicked this lady in the face for asking me whats wrong with him . i hate people like that
 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
 DirtyMetalGirl
Joined: 4/13/2005
Msg: 8
Any single parents of disabled children??
Posted: 8/13/2005 5:50:12 PM
Have two brats that are both dolls. My oldest has Aspergers' (highly functioning autism)which now I know what the heck it is can deal with it well ..Once we helped her to communicate it's been drastic improvement She's 6.. & my lil man (who's almost 4) has quite pronounced hemiplegia due to CP.. & he's finally getting up in walkers & wheelchairs & signing.. Thankfully their dad's doing better & around a bit now & I got a great mom (who's the biggest help I could have) Always hard doing it on your own..... deffinately need to get a good support system going on.... Have You tryed onea the support groups or playgroups through your local Child development center ?
 tattedmompa
Joined: 8/5/2005
Msg: 9
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Any single parents of disabled children??
Posted: 8/13/2005 8:48:54 PM
Hi,I have a 10 yr old with epilepsy,who has been on every medication under the sun and nothing has worked.I also have a 9 yr old who has a mild form of Asberger's.Yahoo has a good bit of support groups for parents with disabled children.Type in the name of your childs disability in search engine and it will give you different sites,some of which will tell you about support groups.Good luck.
 someones girl
Joined: 8/8/2005
Msg: 10
Any single parents of disabled children??
Posted: 8/14/2005 3:01:43 AM
Thank You so much for putting this thread up!!

Hi and good work to all the parents of disabled children

I have a son with severe CP. He is very bright, but most people can not understand his comunication attempts when he speaks, bevcause although he has signs and symbols to help him communicate he has recently develped a big thing against usuing them because he doesn't like standing out! Part of his CP is epilepsy, for which he is on a high dose of an anti-convulsant.. that makes him quite sleepy sometimes, and some days he'll tell me "mum, i don't want to go to the such and such today, i need a sleep!"

He has a wheelchair and a walker, a standing frame, and all sorts of assistive technology such as splints (pah it's hardly technological-lol the british nhs isn't all that technological in some areas), talking technology-at the moment he is learning to use a dinavox. It's a brilliant piece of tech,. it has a touch sensitive screen with folders and sub menues, each submenu tackling a different area of a subject.

His muscular problem cause problems with every system in his body, be it the heart and lungs, digestive or whatever, the lack of muscle structure has it's effects.

His dad has never been around, and that is a big issue for him just now aswell, at 5 he's just full of so many question as to whys and hows etc... Thats a not very nice thing to retell of how he came into being, and it's probably something i will not tell him when he's older.

It gets tough sometimes, but you always get through and his temperament and the things in life he's taught me are invaluable!
 am70sguy
Joined: 6/11/2005
Msg: 11
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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.
 GreeneyedMisfit
Joined: 8/13/2005
Msg: 12
Any single parents of disabled children??
Posted: 8/15/2005 12:00:30 PM
I have a nearly 18 yr old daughter who is undiagnosed but presents with multiple disabitliies. I wish she had "soething" to hang our hats on. Its been tough over the years accessing services and finding resources since she doesn't have a diagnosis. She was diagnosed with limb girdle dystrophy when she was 3, but they (genetics and specialists) all disagreed and that diagnosis was tossed out. She's globally delayed with hypotonia and severe motor planing difficulties. I consider myself blessed most days cause shes completely mobile, pretty indepedent and I see her living semi independently later on.

The most frustrating part is that she turns 18 and i have to apply for guardianship of her and my ex is objecting. He wants to be the guardian.

She lives with me full time with the other two siblings . Arghh!!

My son is 12 and has a verbal learning disability due to an injury during the birth process. He's a walking miracle and I love him to bits.

They go to a private school for kids with special needs now and I think that was a good decision.

Their sister in the middle is gifted. How does that work?
 jaxxx
Joined: 5/10/2005
Msg: 13
Any single parents of disabled children??
Posted: 8/15/2005 3:57:13 PM
I have two children , and one has downsyndrome. I love my kids more then anything , when i look at them i dont see a difference between them , i love them for who they are. I dont see downsyndrome when i look at my child i see my little boy who is happy and funny and a joy to be around, and i see those same qualities in my other son also.

I dont mind people asking questions , of what is wrong with him....I prefer questions , then stares or getting ignored. Not everyone knows about every disability. I had never met anyone with downsydrome before I had my son, so for me its ok for people to be curious and ask questions. The only way your going to teach anyone anything is by talking to them and answering questions.

Getting mad at people just because they dont know what disability, or why your child looks/acts different is just as bad as people treating kids badly just because they are different then other kids.

Ignorance does work both ways.

Hotblonde mama........when I seen your sons pic, it so much reminded me of my son when he was that age......it would be nice to talk to you...i tried but i couldnt get through to you
 jaxxx
Joined: 5/10/2005
Msg: 14
Any single parents of disabled children??
Posted: 8/15/2005 3:57:52 PM
I pressed the wrong button.....sorry
 GreeneyedMisfit
Joined: 8/13/2005
Msg: 15
Any single parents of disabled children??
Posted: 8/15/2005 4:20:44 PM
jaxx, you are absolutely right..
Most people treat children with disabilities differently because they don't know any better.
Maybe they have never been exposed, don't understand it or really are so uncomfortable that they don't respond well.
Education is the best tool in having our children become regular joe citizens. Everytime someone asks me about my daughter or son, I explain it as best as I can and I try and give them an idea of what to expect of her or him.

I work in a school for kids with special needs (our student teacher ratio is very low (1-10) or less) and when our corporate partners come through the school many of them are shaken to the core by what they don't understand and are afraid of. Dispelling the myths that come with any disability is important.

I met the most fantastic teenage girl some years back. She was an athlete with special olympics (my daughter is too) and she had won athlete of the year. She told me that she was happy she had Down's syndrome because she was able to show people not be afraid, or mean to other people. She now works with a national agency in bringing Down's syndrome to the forefront for research.

Having a special needs child is tough.. no one can say it isn't but to those of us that walk the path less travelled, the sights and sounds are sometimes beyond belief.

I have become a better human being and I believe my kids show people everyday how to be better human beings.

peace out,
K
 someones girl
Joined: 8/8/2005
Msg: 16
Any single parents of disabled children??
Posted: 8/15/2005 4:26:11 PM

Getting mad at people just because they dont know what disability, or why your child looks/acts different is just as bad as people treating kids badly just because they are different then other kids.

Ignorance does work both ways.


I totally agree with you on that point. I often find myself telling a parent who has hushed their kid's questions when we are out shopping or somewhere "No," then tell the kid who's curiuos "he has a wheelchair to help him get around, just like some people need to wear glasses to help them see!" or some such simple analogy

 blondksbaby
Joined: 4/18/2005
Msg: 17
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: 18
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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.
 GreeneyedMisfit
Joined: 8/13/2005
Msg: 19
Any single parents of disabled children??
Posted: 8/16/2005 8:08:26 AM
(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)

Jennifer,
I know its really hard when they are small, it was tough for me too. I remember those days well. Its important to keep telling him how important he is to you and how much you love him. There really isnt a fix for it. Time helps and as he gets older, you can look into some of those sibling groups that often recreational services for disabled kids run.

As parents of a disabled child, sometimes we mistake normal sibling rivalry for a more malicious type of action because our protective instinct is so strong for the disabled child. I know that was the case for me. Its a like a mother bear protecting the runt of the litter I guess. I always came down harder on the other two when they picked on or bugged their sister than when she did something to them. It took the other two to get old enough to tell me Hey... she just did that.. or how come when she does this you don't (whatever I did to them)? It made me stop and realize maybe I was changing the rules and of course you will.
Life is a lot like golf.. it isn't always fair.

Thank goodness you have supportive parents. I know that I spent most of my children's young childhood as a single parent for a month at atime. (My ex worked overseas rotational). It can be overwhelming. Find a good support network if you can and this appears to be a good one too.

God Bless,
K
 dontfencemein
Joined: 10/12/2005
Msg: 20
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: 21
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
 bubblegum_twins
Joined: 1/29/2006
Msg: 22
Any single parents of disabled children??
Posted: 3/27/2006 10:56:54 AM
Msangeluva just curios as to the progress your daughter has made over the years, my son is 8 and autistic and made remarkable strides however im still terrified as to his future and my ability to help him,
 pagent_mom
Joined: 11/29/2005
Msg: 23
Any single parents of disabled children??
Posted: 3/27/2006 11:31:37 AM
MY son is visually impared. He was born with his eyes crosses. And it took two years for him to have surgey to correct this. By then he was delayed inhis fine motors skills because he couldn't see well enought to develope these things. Then last year he was diganosed wtih a second vision problem that glasses or surgrey willnot fix. The muscles in his eyes are always spasaming (sp) So alot of the times thigs appear shacky or moving. He will always need to have large print books and may never drive a car. At 7 years old he still can't catch a ball because no matter how lightly you toss it, it is just a blur to him.

I find that alot of people are really stupid when it comes to disabilities like his. I get comments like. " You are babying him." " Oh, he has glasses he should be able to see" I have goten to the point with some of these stupid peole of jsut telling them to look through my son's glasses and please tell me that he doesn't have a problem. Then add in the fact that even if you stand perfectly still my son still sees you as blury or shaky. That usually shuts them up.
 Skinnbones
Joined: 5/17/2004
Msg: 24
Any single parents of disabled children??
Posted: 3/27/2006 12:33:49 PM
I have a wonderful allmost 4 year old daughter that has Schizencephally and Cerebral Palsy (right sided hemiplegia). She is missing part of the left side of her brain as well as she is somewhat paralized on the right side of her body as well a 60% vision loss in her right eye. There are so many wonderful organizations and people out there that have truly been a blessing But it is still a challenge.
 jen76
Joined: 3/27/2006
Msg: 25
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
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