Question For Anyone

[GroovyWheeler]

Not Disney-related, but I was hoping that someone could help me out on this. As some of you probably know, my fiance' (we're getting married July 17th of next year), Dan and I both have disabilities. He has Traumatic Brain Injury and I have Apert Syndrome, among orthopedic issues which I use a wheelchair for.

Anyway, I belong to a group known as "People First", and one of the topics we covered at our get-together today, was parents with disabilities raising kids. One of the members was telling us about how she knew this one woman with Cerebral Palsy, and how Child Protective Services didn't trust her enough to raise a child, and that she had to prove to them really hard that she could do it.

Dan and I want to have kids someday, as we are both good with them, and he has always wanted to be a dad, as I've always wanted to be a mom. But, after hearing about what happened with the woman, I'm worried that we might get the same kind of treatment as she did, especially since there are two of us with disabilities, and because Dan has Traumatic Brain Injury, but doesn't show much of the effects from it, especially when it comes to his personaility when he's around me (which is wonderful, goofy, and a whole lot of other good stuff).

I'm curious to know as to why these people have to judge people like us, when it comes to being parents. I have normal intelligence, and am aware of what goes on around me, and so does Dan. But when we have kids, I know that they're are going to be people out there, who will judge us, like they're saying, "You guys can't really do this kind of thing." Along with the ones who'll praise us, and admire us, for just being the parents that we are.

Samantha

 

[rjthkids]

I think it relates to the fact that most people don't have personal experience with those who have disabilities, so they make assumptions about their parenting skills based on assumptions of what they can and cannot do.

When we realized my daughter was going to be blind, I remember my first reaction being to think of all the things she would never be able to do. It wasn't until I talked to some at the National Federation for the Blind that I began to realize and focus on the many, many things she *could* do. There are many people who assume that someone who is blind couldn't possibly raise children...I have met several women who very successfully raised children without the use of sight, and I gleaned a lot of wonderfully creative ideas and solutions they had to properly care for their kids without being able to "see" them...from tying little bells to their feet to keep track of where they were going, to super toddler-proofing the house etc. etc.

Don't let anyone else's opinions sway you on whether or not you can be parents! You and your husband know better than anyone else what it will mean to parent your children!

 

[SueM in MN]

I have been on the other side of your question.
For a number of years of my life, I was a Public Health nurse. I visited people with children and I also worked with some Social Workers on cases where we were both court ordered to be there. Our legal responsibility was to make sure that the children were safe.
Now, that can be approached negatively (by the health care people having a "prove this, prove that" mentality or by the parents having a "they're just trying to figure out how to take my child away" mentatiliy). Neither of those will work. It works best if parents and health care workers can see themselves as a team, working for the best interest of the child. Like any team, mutual respect is important.

Social Services (actually the court system) can't take a child away just because the parents are disabled. They can take a child away if it the child is being abused or neglected. It's usually in the best interest of everyone for the child to stay with their parents (with support, if necessary).

The Social Workers I worked with were great. Their philosophy and my philosophy was not to have our clients "prove" that they could raise their children safely. Our job was to make sure that people had the tools and skills they needed to be good parents. If you watch TV shows like Supernanny, you can see there are plenty of parents without disabilities who need some tools they don't have.
Most of the parents I visited were not court ordered - they were people that a doctor, a friend or relative thought could use some extra assistance. Many called in themselves because they wanted some parenting tools.

Some things that would be helful for you to do before you have children would be to think about what care a child needs and how to do it. For example, someone using a wheelchair is going to need to have different ways to carry their child around than someone who is ambulatory. Someone with use of only one arm will have to figure out how to change a diaper. A deaf parent will need to figure out when their child is crying. Some of these things may be things you have already though about or can think of a solution for easily. Some, might be things that you need others to help you think about solutions for. Doing things like that will help others see that you are serious about trying to be good parents and also let them see you and your fiancee as intelligent, independent individuals.
I always thought it was fascinating to see what solutions people came up with. And, sometimes I could help them see that something they saw as a big problem had a simple solution that they couldn't see because they didn't have enough experience.

 

[Nanajo1]

A couple of months ago The Learning Channel did a follow up story on a local couple. They are both quadraplegic. They have a 7 yo son. The original story followed the pregnancy. The mother was the first with quadraplegia to conceive and deliver a child at UMass Memorial Hospital. The dad is more mobile and was the primary caretaker when their son was an infant. This story looked at their lives 7 years later. It was a show demonstrating how adaptations can be made and how normal life is for them.
I wish you luck.

 

[JenJen]

Sue had some great points and advise. Social services only removes a child from the home as a last resort. Get as much support from the state as you can. They are not the enemy they are there to support you. I wish you the best of luck

JenJen

 

[BillSears]

I just wanted to chime in with my experience. I'm a paraplegic with a daughter. I've never had anyone doubt my ability to raise her. Her Mother and I divorced when she was 2 but I was still very active in her life, keeping her by myself most weekends. When my daughter was 9 her Mother moved out of state and I became a single Dad. She lived with me during the school year and lived with her Mom during the summer. She's 21 now, attending college and still lives at home. I think she'd say I did a pretty good job of raising her.

 

[BibbidyBobbidyBoo]

A couple of months ago The Learning Channel did a follow up story on a local couple. They are both quadraplegic. They have a 7 yo son. The original story followed the pregnancy. The mother was the first with quadraplegia to conceive and deliver a child at UMass Memorial Hospital. The dad is more mobile and was the primary caretaker when their son was an infant. This story looked at their lives 7 years later. It was a show demonstrating how adaptations can be made and how normal life is for them.
I wish you luck.

Are you sure they were quadraplegic? Quad means paralized from neck/chest down. Paraplegic means have some use of upper body. My mother is quadraplegic and basically cannot do anything by herself or move or anything- and certainly couldn't have raised my younger sister (I was 20, she was 9 when my mother had the accident) by herself... even at age 9. I could totally see how paraplegics could do that- but quadraplegic? Both of them? I don't even see how they could conceive naturally that way.

To the OP, you've been giving a lot of wise advice on this thread that I really can't add to, especially SueM's post! I agree with everyone- don't let others thoughts, comments or anything else make your decision for you. You know your capabilities and if you believe you can care for a child- you go for it.

 

[Nanajo1]

Are you sure they were quadraplegic? Quad means paralized from neck/chest down. Paraplegic means have some use of upper body. My mother is quadraplegic and basically cannot do anything by herself or move or anything- and certainly couldn't have raised my younger sister (I was 20, she was 9 when my mother had the accident) by herself... even at age 9. I could totally see how paraplegics could do that- but quadraplegic? Both of them? I don't even see how they could conceive naturally that way.

Yes they both are quadraplegic. Quadraplegia means all four limbs are affected. It includes those who have total paralysis and those who still have some sensation and movement but all four limbs are involved. The dad had some upper body limitations but was able with adaptative equipment to care for the baby. The mother has a personal care attendent who helps with her ADLs but the mother drives and has a job outside the home.I don't know the method of conception but the baby was delivered by c-section.

 

[SueM in MN]

Yes they both are quadraplegic. Quadraplegia means all four limbs are affected. It includes those who have total paralysis and those who still have some sensation and movement but all four limbs are involved. The dad had some upper body limitations but was able with adaptative equipment to care for the baby. The mother has a personal care attendent who helps with her ADLs but the mother drives and has a job outside the home.I don't know the method of conception but the baby was delivered by c-section.

I didn't see the TV show, but Nanajo explained quadreplegia well.
When people think about quad, what usually comes to mind is Christopher Reeve. He had a very high injury. Some quads have more or less movement/sensation than he did. During Rehabilitation, the aim is to make the best use of whatever abilities the person has. With some movement in the chest muscles or shoulders and some specialized equipment, a person with quadreplegia can do quite a lot.
Here's a link to a webstory about Jill Kinmont, who is a sort of famous person who is quadreplegic. She became a quad after a serious skiing accident while preparing for the 1956 Olympic team. The movies, The Other Side of the Mountain and The Other Side of the Mountain, Part 2 are about her life (the movies are based on books of the same name). She is able to drive a car and a power wheelchair, write and paint with special splints for her hands that hold things. I know in her case, she is able to raise her arms up, but not lower them. So, she can place her hand somewhere and then let gravity pull it down to do what she needs to do. In the picture on that webpage, you can see that her right hand has a splint on it that is holding a pen or something. Her left hand is sort of balled in a fist. She doesn't have functional use of her hands to hold things, but can use her shoulders/upper arms to move her hands.
Some quads have enough movement that they can propel a manual wheelchair; if you see someone with knobs on the sides of their tires, they usually are using muscle strength to raise their arm and put their hand on the knob, then use a combination of gravity and muscle strength (or maybe just gravity) to push the knobs forward.

 

[BibbidyBobbidyBoo]

As I said, my mother is quadraplegic. She has been for over 15yrs. I know a lot about quadrplegia and don't really need a lesson on it or have it explained to me. LOL I also watched that show many years ago- even before my mom's accident. Ironically it was one of few movies that really touched me in my younger years. Ironic because then ofcourse my mother became quadraplegic years later.
I know that some use of the arms/etc. can still be there or returned with therapy even though still classified quadraplegic... my mother for instance can lift her arms (but can't feel them, including not her hands/fingers either or anything below her chest) and she can bend her wrist- but not her fingers. Her "bionic arm" (as my kids put it LOL) helps her to pick up things with 2 fingers/thumb being moved by that contraption, not by herself. She can pick up a pencil or toothbrush and such, but to pick up a baby? Never. To lift herself or even turn herself the slightest bit in bed- never.
But I thought quadraplegic definitions is not to the point that they are able to lift themselves up in wheelchairs/etc. Even as little movement/feeling that my mothers has she has recently been classified as paraplegic (as far as healthcare/medicaid) and is fighting that. She is nowhere near paraplegic level of movement/injury she had.
And that's what I was thinking would be necessary in order to concieve a child (lift yourself, move yourself, you know what I mean). I guess perhaps it was "helped" a little like invitro fertilization or something.

The dad had some upper body limitations but was able with adaptative equipment to care for the baby.

The adaptative equipment explains a lot. I thought he was able to not only conceive the child (ie: some action below the waist IOW lol) but also to care for the child unaided. Which is what made me think he had more upper body movement and strength and possibly not really quad but paraplegic instead. The mother apparently has some good mobility/movement atleast in her arms to be able to drive also.

Anyway, like I said... didn't mean to offend anyone. Just thought it would be near impossible to have a child and care for one with BOTH parents completely paralized- or to the degree my mother was as quad... I admit I only know mostly about quadraplegia and more specifically the level of injury my mother had. don't know a lot about paraplegic definitions/levels/etc.

 

[BillSears]

Just a couple of points to add about the quadraplegic father. For one thing just because you can't feel or voluntarily move something doens't mean that involutary functions don't work. So conceiving is possible.


Secondly have you ever seen quads play Murdeball? It's designed for quads not paras and it's one heck of a rough game. It's basically wheelchair rugby. To me quadraplegia is not having the full use of your hands.

http://festival.sundance.org/2005/filmguide/popup.aspx?film=6365

 

[RaySharpton]

I just wanted to chime in with my experience. I'm a paraplegic with a daughter. I've never had anyone doubt my ability to raise her. Her Mother and I divorced when she was 2 but I was still very active in her life, keeping her by myself most weekends. When my daughter was 9 her Mother moved out of state and I became a single Dad. She lived with me during the school year and lived with her Mom during the summer. She's 21 now, attending college and still lives at home. I think she'd say I did a pretty good job of raising her.

I think that Bill says it all. I bet you are a wonderful father, Bill. And it seems like you have a lot of support here from so many caring people. Best Wishes.

Sincerely, Ray

 

[SueM in MN]

As I said, my mother is quadraplegic. She has been for over 15yrs. I know a lot about quadrplegia and don't really need a lesson on it or have it explained to me. LOL

Sorry. I plead guilty to making assumptions from what was written.
It was maybe useful for other readers though (who would think this thread would have been opened 350 times!)

Two quadreplegics would need to do a lot of constant though of what the baby would be doing next devepmentally in order to stay prepared and think of how they were going to do things/change how they do things as the baby changes. That would be a challenge.

 

[BibbidyBobbidyBoo]

Just a couple of points to add about the quadraplegic father. For one thing just because you can't feel or voluntarily move something doens't mean that involutary functions don't work. So conceiving is possible.


Secondly have you ever seen quads play Murdeball? It's designed for quads not paras and it's one heck of a rough game. It's basically wheelchair rugby. To me quadraplegia is not having the full use of your hands.

http://festival.sundance.org/2005/filmguide/popup.aspx?film=6365

I was thinking more along the lines of impossible to get in POSITION to conceive. But then again see I was thinking paraplegic is when you have strong enough use of your arms to be able to get yourself in that position. I realize what you're saying- and it's easy to conceive in that condition when the other partner is not also quadriplegic. You'll have to forgive me- my idea of quadriplegic is perhaps misinformed by experience with my mother. I really thought paraplegic is when you have use of your arms to that degree- to be able to lift yourself, push wheelchairs like the picture you showed, etc.

I know that it's not true about quadriplegic not having full use of your hands- because my mother has NO use of her hands but since she can move her arms and use the "bionic arm" (as we call it- can't remember the technical word) to pick up things (move her fingers for her based on her wrist movement up or down)- they are trying to classify her as paraplegic in terms of care needed (healthcare/medicare/etc.). It's the ARMS they are concerned about- not hands or fingers. If that was the case- we wouldn't be having to fight this- because she can not feel nor move her hands or fingers. She can't feel her arms either- but she can move them. She learned through therapy how to use different muscles (than we usually use) to for instance raise her arm a little (she can raise it to face level but not above that), bend her elbow some and bend her wrists.

I guess I could be wrong but I really thought paraplegic was the degree of injury in which they'd have good use of their arms- able to lift themselves, push wheelchairs, etc. In the PAST I really thought quadriplegic meant you were quad for life- even if you received some use of things later on. For instance if your level of injury left you a quadriplegic but through therapy you were able to use your arms again/etc. But with recent issues with my mom with them trying to reclassify her as paraplegic, my thoughts on that have changed. Apparently once a quad is not always a quad, atleast in some people's eyes.

I had to just go see what the definitions of these words are:

par·a·ple·gi·a ( P ) Pronunciation Key (pr-plj-, -j)
n.
Complete paralysis of the lower half of the body including both legs, usually caused by damage to the spinal cord.

quad·ri·ple·gi·a ( P ) Pronunciation Key (kwdr-plj-, -j)
n.
Complete paralysis of the body from the neck down.

That's the way I thought of quadriplegia and that's why I was confused how two with quadriplegia could possibly conceive and care for a child on their own.
I guess that's why they are trying to re-classify my mother's condition since she CAN move her arms somewhat- they are no longer completely paralized. However, that would also mean those pushing those wheelchairs are not quads.

Sorry for the hijack. I shouldn't have said anything. I was just confused how that could be possible without outside help- moving their bodies to help them conceive naturally or IVF to convieve and couldn't possibly see 2 of my mother taking care of a child by herself. Paralyzed from the neck down would make that impossible!

Definitely useful for many, Sue. No apologies necessary... I hope I didn't offend you with my comment.