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Family and Personal Relationships

1. Relationships and Dating after SCI

1.1. Wives and Girlfriends of Spinal Cord Injury (WAGs of SCI)

WAGS of SCI
WAGS formed a meet up and support group exclusively for Wives/Girlfriends of men who have sustained a Spinal Cord Injury, where people can discuss their experiences and learn from one another. Their #1 goal is to provide outreach and ensure support for women who are new to this life.

1.2. Dating Websites

Dating 4 Disabled is an online community which offers the opportunity for people with disabilities to share, connect and just be heard. Make friends, find romance, and share resources with people from all over the world. Dating4disabled.com welcomes disabled as well as able-bodied members on condition that they want to meet people with disabilities and are committed to respecting all of our members.

Disability Dating is a relationship service for people with various disabilities and life challenges. Although our main audience is intended to be people with a wide range of disabilities, other individuals are welcome to join the site as long as their primary focus in joining is to respect and understand the main audience. The purpose of DisabilityDating is to to provide a 'venue' through which people of all ages, ethnicities, disabilities, impairments can 'meet' and choose whether they wish to meet, date and ultimately fall in love.

Disability Dating (in UK) Offering genuine fun and intimacy with disabled singles. Specialist disabled dating to meet single adult men and women who share your disability, condition or life challenge within a friendly vibrant disabled community.

Soulful Encounters SoulfulEncounters.com works with various disabled people and organizations to connect those who are physically and medically disabled and provide support, friendship, and a love filled social networking community.

You may also want to join a general online dating site like match.com or eHarmony for access and exposure to many more different types of people. Match.com has a page about dating with a disability

 

1.3. Communication in Dating and Relationships after Spinal Cord Injury

Communication in Dating and Relationships after Spinal Cord Injury
The SCI Forum "Communication in Dating and Relationships after Spinal Cord Injury" is now available as streaming video. This forum took place on February 9, 2010 at the University of Washington Medical Center. Does a spinal cord injury change the importance or nature of communication in a relationship? Most people you meet may know little or nothing about SCI. Does it make you wonder whether you can meet new people, get out and date, and have long term relationships? How can you put people at ease so they can feel comfortable asking all those questions they are probably thinking about, and how can you be at ease answering them? When and how do you start talking about the physical side of SCI, such as bowel, bladder and sexual function? In this forum video, our "expert" panel of single, dating and married individuals with SCI share their experiences with post-injury dating and relationships.

1.4. SCI Forum Report: Dating and Relationships after SCI

SCI Forum Reports

Dating and Relationships after SCI

February 14, 2006

Dating is hard enough in the best of times; after a spinal cord injury, insecurities about body image and doubts about one's desirability as a romantic partner can become a major concern. At our annual forum on dating and relationships-which fell on Valentine's Day this year-several people with SCI shared their personal experiences of coming to grips with their changed selves and making their way in the world of dating and mating after injury.

When Brad became paralyzed from the chest down after a motorcycle accident in 1991, he went in an instant from being "close to 6 foot 4 and 215 lbs.to 4 feet 5 inches( in a wheelchair)." After leaving the hospital, he worried about what people saw when they looked at him and what assumptions they might be making about him-did they see him, or did they see a disabled person? "I didn't know how to react to myself, let alone how to react to somebody who was reacting to me," he remembered. Getting comfortable with himself was an important step in being able to feel confident about dating.

Brad's wife of seven years, Amy, had never met anybody in a wheelchair before him. "On our first date I knew instantly she was the one I wanted to be with," he recalled. As questions came up about what the future together might look like, Brad found that communicating openly about all the fears and questions they both had was the only way to make it work. "We talked about everything; there was no taboo," he said. This helped them get through the early awkward times as well as later when they decided to have children (they now have twin babies, a boy and a girl, from in vitro fertilization ).

"If you're afraid of something, talk about it," he advised. "People are afraid of what they don't know."

Amy admitted she didn't know anything about paralysis when she met Brad. "One thing he did for me that was really helpful was give me some materials to read that talked about sex after SCI, the actual bladder and bowel stuff and how that works," she said. Reading it helped her come to terms with it on her own, and gave her specific questions to ask him later.

David has had tetraplegia (quadriplegia) for 10 years. He has dated several women since his injury, and in the last year has been in a romantic relationship with Janna. He agreed that honest and open communication has been a key element in the success of this relationship. "I finally found a good woman to fall in love with and cut through the bull****," he quipped.

Janna and David met when she started renting his downstairs apartment. "I liked him right away," she recalled. "We started talking more and more, really getting to know each other. I've never met anyone so fabulous. I've never felt so cared for."

When asked about their physical relationship, David answered, "With SCI you don't have to worry about performance anxiety. It changed the dynamics wonderfully. It's actually pretty liberating in a lot of ways." Turning to Janna, he asked, "What do you think?

"I couldn't agree more," she said. "And again, honesty and communication take a lot of the angst out." Humor has also helped to overcome awkwardness, as it does in any relationship. "We joked a lot and had a lot of sexual innuendo and energy before we even got to that point (of a physical relationship)."

Tricia sustained a T4-5 injury in a car accident 13 years ago, at age 17. "After my injury, the first thing I had to deal with was my body image," she remembered. "I came out of the hospital almost bald (an allergic reaction to medication). I had lost a bunch of weight, had a big bloated stomach from surgery, and I was paralyzed. I thought-who is going to want me?"

When she went back to high school after rehab, "everything was different. I couldn't drive for a year, I couldn't go out to the same places my friends were going. I was so scared to date and explain everything, all the bowel and bladder stuff-I hadn't gotten that under control yet. How was I supposed to date someone? It was really hard."

Most people don't get through life without experiencing a bad date or rejection at some point, and people with SCI are no different, except they can be left wondering-was it me or the disability? Sometimes you'll never know for sure, but Tricia painfully recalled the guy she dated in college who broke things off abruptly, admitting he couldn't handle dating someone in a wheelchair.

The flip side of this was men who were interested in her because of the disability. "In my early 20s, going to bars with friends, guys approached me out of curiosity, guys who just wanted to know what it would be like to be with a girl in a wheelchair. They'd come up with weird pick-up lines, like, 'Hey, so how are we going to get busy on that thing (the wheelchair)?'"

Over the years Tricia has noticed a pattern in the kinds of people she's been in relationships with. They were either 1) "carefree types who just don't care" about whether she had a disability; 2) people who already knew someone in a wheelchair; or 3) people in the health care field. "I've dated a couple of people with SCI, and that's nice because you're already comfortable with the situation."

Her worst date ever was at the movies with a guy she really liked. She hadn't had "the talk" with him yet-the one about the more private details of her disability-because she didn't want to "scare him off. I wanted him to get used to me first," she recalled. "And then-oops!-I had a bowel accident. It was very awkward and embarrassing. But you have to deal with that; it's the reality of my life, unfortunately."

Like anyone else, Tricia has had "good relationships and bad relationships." Several years ago, after encouragement from friends with disabilities who had met their lifelong mates through the Internet, Tricia decided to try online dating. Fast-forward to the present: she and her partner are celebrating their six-year anniversary. "I was living in Florida and got a response from an occupational therapist from Seattle. We talked and emailed, and after a 1 ½ years of a long-distance relationship, I uprooted my life and moved to Seattle. We bought a house together last year." Her advice: keep trying.

Ted had been dating the woman who is now his fiancée for seven months when he crashed his ATV almost two years ago and broke his neck. One of his earliest worries was, "If I'm in a wheelchair, how can she really love me?" But the fact that she drove 400 miles to Seattle from Idaho every weekend for 14 weeks while he was in rehab was powerful evidence of her devotion. "I really felt loved," he said. "It helped me get through my rehab." Ted had been through two failed marriages and many relationships before meeting his fiancée and, echoing the words of the other panelists, has learned that good communication is vital to a healthy relationship.

Maturity is another factor. Tricia found that college-age men were more reluctant than older men to date someone who was "different" or perceived as having "problems," like SCI. "Older men were more mature, more patient, past the partying stage. They dated me for who I was as a person."

Sometimes friends or relatives try to discourage a person from getting involved with someone who has an SCI. A man in the audience reported that the parents of a young woman he was dating after injury pressured her to break up with him. "Her parents still played a large role in her life," he said. "They were afraid she would become my nurse and I would leech off her my whole life. That was the first time I had experienced prejudice. It took me a while to understand that it wasn't about me, but about her family's issues."

On the other hand, a person with SCI can be the victim of his or her own stereotypes. This same man pushed away a loving relationship soon after his injury because he felt he was only "half a person" and unworthy of being loved. "It was too soon," he said. "I hadn't come to terms with my changed image." Knowing and accepting oneself is an important first step toward relating openly and honestly to others.

Ted said he has to regularly check his feelings of inadequacy about not being able to do the things he used to do. For example, "I hate it when she has to get out of the car and fill the gas tank. I feel like people are giving me dirty looks. If anything were to smash our relationship it would be my insecurities. And the thing that keeps those at bay is communication."

"Everybody, whether in a wheelchair or not, has to deal with insecurities," noted Brad. "In some ways the insecurities are more visible (for people with disabilities). For the most part, dating (after injury) is still dating. You date a few people before you find the right one. The wheelchair didn't have that much to do with whether a relationship lasted or not; it was all about personalities."

"You need to ask yourself: what do you want? What makes you happy? What do you search for in a relationship? And just go get it." he continued. "It all starts inside yourself. It's that simple."

For Ted, the SCI forced him to confront what was really important in life. He remembered mourning the fact that he'd never be able to ride a motorcycle again, something he loved doing. "That really depressed me. So I thought really hard about what are the most important things to me and decided there are two things: the ability to laugh, and the ability to love. It's the best thing you've got. Nothing can take that away from you."

Resources

1.5. Love and Marriage after Spinal Cord Injury

The SCI Forum video "Love & Marriage after Spinal Cord Injury" has been posted on the Northwest Regional Spinal Cord Injury System website.


 


Is finding true love possible after a spinal cord injury? The answer from the three couples in this panel discussion is a resounding "yes!" This forum features three couple who met, fell in love, and got married long after one of the partners had sustained a spinal cord injury. Hear their secrets to a successful relationship: good communication, shared values, mutual respect and a sense of humor. This SCI Forum took place on March 12, 2013.

1.6. Wheel Love

Lessons in life, love and wheelies.

Real life stories from two normal (...ok, somewhat normal) girls living extraordinary lives with men who don't let their wheelchairs define them.

Wheel Love is a place where people can come to learn about the good, the bad and the ridiculously funny aspects of living with and loving someone in a wheelchair. It's also a place where people in similar situations can find support, encouragement and friendship through our words, our videos and our experiences.

1.7. Relevant articles

Committed Couples
An article by Josie Byzek, from New Mobility magazine (February, 2001) that tells how love and mutual respect are a part of the long-lasting relationships of six different couples.
Committed Couples: part two
An article from New Mobility magazine (March, 2001) by Josie Byzek that presents five couples and what they have to say about keeping a good thing going.
Couples Now & Then
Article from New Mobility magazine (February 2009) that highlights some of the issues people with SCI have to contend with in relationships.
 
I Do! I Do!
An article about three couples who prove that a disability does not mean you can't have the wedding of your dreams. From PN/Paraplegia News magazine.
 
First Dates - True love has to start somehwere, doesn't it?
An article from New Mobility magazine February, 2000. This article presents four individuals experiences with dating, relationships and where they lead.
 
Sex and the Single Guy
Article by Stanley DuCharme from PN August 2010
Even with all the advantages of Internet dating, meeting a potential partner and establishing an intimate relationship requires a certain degree of confidence and courage.
 
Two Living As One: Give and Take
An article from New Mobility magazine (February, 2002) by Annalysa Lovos.
A story of the changes and challenges in a relationship and marriage.

2. Parenting after SCI

2.1. Hope Talk-Pregnancy With a Disability


Hope Talk-Journey to Motherhood

                                                     Hosted by Help Hope Live
                            Medical Fundraising for Expenses Insurance Doesn’t Cover

An incredible journey with four amazing disability advocates and influencers about their journey to motherhood. Don't hear your question? Subscribe to Help Hope Live’s Latest page to be the first to know:  https://helphopelive.org/latest/​ 

Panelists on film and Instagram!
Help Hope Live: https://www.instagram.com/helphopeliv...
Dani's Twins Film: https://www.instagram.com/danistwinsf...
Dani's Twins trailer:  https://youtu.be/NPmnyndtNsM
Dani Izzie: https://www.instagram.com/daniizzie/
Amanda Perla: https://www.instagram.com/mando313/
Alyssa Higgins: https://www.instagram.com/wheel.life....
Kelley Simoneaux: https://www.instagram.com/pushylawyer/

Film: Dani twins, the journey


2.2. Hope Talk-Parenting and Relationships With a Disability

Hope Talk-Parenting and Relationships while living with a mobility disability May 2021

In this Hope Talk, we were joined by Dani and Rudy Izzie and their friends Valeria and Alessandro Isaacs.
Dani and Valeria are both living with quadriplegia and are mothers to young twins. The couples shared their
experiences and advice on everything from accepting outside help with their children to the importance of
self-care in a relationship.

2.3. Fertility and Parenting

SCI Forum Reports

Fertility and Parenting

December 1, 1998

"There's a lot that goes on in the male to achieve unassisted fertility," said Ivan Rothman, a nurse practitioner in the Department of Urology. First, a man needs at least one testicle to produce sperm, and the structures necessary to get the sperm up and out of the body. Sperm travel from the testicles through the vas deferens to the seminal vesicles and the prostate. Ejaculation is necessary to get the sperm out of the urethra, and an erection is required for vaginal penetration. Sperm need to be motile, i.e., able to move from one place to another. Finally, the sperm must be capable of penetrating the ovum (egg) and fusing with its genetic material.

"In the general population, about 8-10% of cohabiting couples are infertile, defined as trying and failing to get pregnant for at least 12 months," Rothman said. In about 30% of couples, infertility is caused by a problem with the male; in 30%, with the female; and in 40%, the cause is unknown. Male factor infertility, which is Rothman's specialty, can be caused by a problem with any of the structures or processes described above. "SCI can have a profound effect on male fertility," he said.

"We frequently get men who come into our clinic soon after an SCI having been told they should have their sperm cryopreserved (frozen and stored in a medical facility) right away because things will only get worse as time goes on," Rothman said. "I don't know that the research supports that statement." While male fertility normally declines somewhat with age, female fertility declines 50% by age 40.

"Most of the fertility tests we do are much better at predicting failure to conceive than ability to conceive," Rothman said. "Occasionally a recently injured single man comes into our clinic wanting to know if he'll be able to reproduce in the future. We can do a semen analysis, and if things look very, very bad, I can talk definitively about his ability to conceive. But it's hard to say how good things are, and that's what people want to know. The best information we can give people is in a practical situation, when a couple is attempting conception, and we can tell them how this may work. A couple's goals drive the treatment plan."

During the infertility evaluation, men will be asked about their bladder management methods in order to determine their risk for lower genital tract infections, which can effect sperm motility. Infections or inflammations can be treated with antibiotics. Patients will have a blood test to measure whether they have normal levels of a follicle-stimulating hormone that stimulates the production of sperm in the testicles. Patients will be asked if they are able to ejaculate on their own or with the assistance of special equipment, and whether their semen is antigrade (going out of the penis) or retrograde (going back into the bladder), since this affects sperm quality and quantity.

If a patient cannot ejaculate on his own, Rothman usually starts him out with a vibrator because it is non-invasive, inexpensive, and safe. Held against the underside of the glans of the penis, the vibrator delivers high-intensity stimulation which produces a reflexive ejaculation. Although the first attempt takes place in the office in order to watch for autonomic dysreflexia, couples may bring the vibrator home for another try "because these kinds of interventions often work better at home," Rothman said.

Electroejaculation is a more invasive technique that may be tried if a vibrator is unsuccessful. A probe placed in the rectum sends an electrical current across the seminal vesicles and the prostate to try to cause a muscular contraction that results in ejaculation. This procedure is always done in the clinic with continuous blood pressure monitoring. The drug nefedipine may be given to patients to prevent autonomic dysreflexia. For patients with sensation, the procedure is done under general anesthetic.

When these methods fail, sperm may be removed directly from the testes with needle aspiration.

Semen is analyzed in the laboratory to determine sperm concentration, motility, and other factors that affect fertility. Depending on the results, treatments can be applied to the sperm to improve motility and increase their concentration, or to the patient to reduce inflammation or infection.

SCI does not affect a woman's fertility, said Brenda Houmard, MD, from the UW Fertility and Endrocrine Center, and "the current medical literature suggests that there are excellent outcomes for both mothers with SCI and their infants." In general, prenatal and labor and delivery care are changed little for women with SCI, with a few exceptions.

Because of the higher incidence of medical conditions and use of medications in women with SCI, pre-conception counseling is recommended for these women who are planning to get pregnant. Urinary tract infections (UTIs)-which in the general pregnant population carry significant risk for kidney infection with a resulting increase in maternal and fetal complications-are more prevalent among women with SCI due to incomplete bladder emptying and the use of catheters. Close monitoring and treatment of UTIs and preventive strategies such as minimizing residual urine volume and avoiding indwelling catheters are an important aspect of maternal care for women with SCI.

Autonomic dysreflexia can occur in response to labor and delivery and post-partum pain in women with lesions above T5-6 but can be successfully prevented or treated with epidural anesthesia.

Preterm labor is the biggest cause of perinatal morbidity and mortality in the normal population, Houmard said, "so we want to diagnose preterm labor early in all populations. We counsel all women to watch for signs such as uterine pressure and changes in discharge." Women with lesions below T10 often feel contractions, but women with lesions at any level can be taught to feel the uterus both for signs of preterm labor and for monitoring the contractions of full-term labor. Obstetricians may also increase the frequency of cervical checks to monitor for preterm labor in women with SCI, Houmard said.

Women with SCI may have a worsening of pressure sores, urinary incontinence, and constipation during pregnancy. Those with high lesions may have more breathing difficulties due to pressure from the enlarged uterus.

An initial evaluation for couples at the UW Fertility and Endocrine Center focuses on three main causes of infertility, Houmard said. Ovulation defects, or the inability to release an egg on a regular monthly basis, can be detected using a combination of menstrual history, basal body temperature charts, urinary ovulation detection kits, and the measurement of the hormone progesterone in the blood. Ovulatory problems account for about 10-15% of infertility cases.

Abnormalities in the uterine cavities or blockages in the fallopian tubes can be diagnosed using an X ray test called a hysterosalpinogram that uses an injected dye. The third focus of the evaluation is male factor infertility due to abnormalities in ejaculation or semen quality.

"If clearly identified causes of infertility are found, we take steps to correct the defect," Houmard said. If no cause is identified, fertility treatments may still be undertaken to improve the likelihood of conception each cycle.

Intrauterine insemination is typically used when there is low semen volume or low sperm count. After semen is extracted using one of the methods described earlier, sperm are washed in the lab, concentrated, and placed into the uterus using a small catheter inserted through the cervix, "getting the sperm one step closer to where it needs to be for fertilization," Houmard said. This method can be used with the natural menstrual cycle or in combination with medication to stimulate ovulation. Results are generally good for mild to moderate male factor infertility, Houmard said, "with up to a 10-14% chance of pregnancy per cycle, yielding a 40-50% chance of pregnancy in one year."

In vitro fertilization (IVF) is the fertilization of an egg with sperm in a culture dish outside the body. First, the woman receives ovulatory medications that stimulate egg development. Eggs are collected via needle aspiration through the vagina using ultrasound guidance. Sperm collected from the male partner are placed with the egg to allow for fertilization. An embryo develops for several days in the culture dish and is placed back in the uterus. Depending on the age of the woman, there is about a 25% pregnancy rate per cycle.

Intracytoplasmic sperm injection (ICSI, pronounced "ik-see") involves injecting a single sperm directly into an egg under microscopic guidance. Since it requires only one sperm per egg, this method can bring the fertility rate up to normal levels for cases in which the male partner has a very low sperm count.

"The overall message here is that fertility is a definite possibility and should be an expectation for both males and females who have prior SCI," Houmard said.

Costs of infertility services range from $600-700 for an initial evaluation to $6,000-7,000 for each cycle of IVF treatment. Costs will be greater if methods to collect semen require anesthesia or surgery. "In general, most insurance plans don't pay a lot of money for infertility evaluation or treatment, and the vast majority of patients are paying out of pocket," Houmard said.

For the rest of the evening, a panel of SCI consumers and spouses discussed their experiences with conception, pregnancy, and parenting. Steve, who has T2 paraplegia, was warned that his fertility would probably suffer due to his spinal cord injury. Although they were prepared to adopt, he and his wife, Beth, had two children naturally. They have been trying for a third child for several years and are now being treated at the UW Fertility and Endocrine Center for sperm motility and ovulation problems.

When Gary sustained a C5 incomplete injury 25 years ago he was told he would never have children. "I believed that for ten years," he said. But after getting married he and his wife, Karen, decided to explore fertility options before choosing adoption. Gary's sperm were obtained using vibratory ejaculation, and Karen, who was put on clomid, became pregnant with twins through artificial insemination.

Laura, who has T7-8 complete paraplegia, was told she wouldn't have any problems with fertility after her injury 19 years ago and became pregnant with her daughter without difficulty four years ago. Because Laura has no sensation below her injury, she had private birth classes with the labor and delivery nurses at the hospital where she delivered.

After his C4 complete injury 13 years ago, Mark thought he'd never want to have children. But he changed his mind after marrying Lisa, and they went to the UW Urology Clinic for evaluation and treatment. Mark's sperm were removed using direct aspiration from the vas deferens. After three pregnancies and miscarriages, Lisa carried her fourth pregnancy to term and delivered a boy. One year later they tried again and got pregnant with twin boys.

The panelists recommended that couples expecting a baby make arrangements before delivery to get help from family and friends. Mark was frustrated by his inability to help with the babies or household work due to his high level injury. "It eats at you-she was doing all the work," he said. "The only thing I could do was keep working and bringing in money." When Mark's wife Lisa was pregnant with the twins, she ended up on bed rest in the hospital. Their son was one year old at the time. "It was hard for Mark," Lisa said. "My sister basically moved in."

When Gary's twins were three months old, his wife went back to work and he stayed home to provide full-time child care. "You find ways to deal with problems," he said. "I used a pillow in my lap to carry them. When they started to roll, I used a strap. The babies learned to lie still on my lap." When they started walking, they taught themselves how to ride between his legs. "We went everywhere, each boy holding on to a leg. They're very adaptable." At seven years old, the twins now help him with daily tasks, putting his wheelchair in and out of the car and helping him dress. "It's totally natural for them to help," he said.

Kids quickly learn what their disabled parent's limitations are, so it's important to develop a voice control method early in life, Gary said. "I try to keep my voice level at all times. If I do need to warn or stop them, I deepen my voice, and they respond right away."

Steve recommended that people plan ahead and even consult an occupational therapist to work on skills that can help with baby care, such as how to hold a baby against you using a snugly. "Try different equipment and practice with other people's kids," he suggested. Many obstacles can be overcome with a little creativity. After Mark accidentally rolled over one of his twins, "we put jingle bells on them," Lisa said.

Adapting to children's changing development is an ongoing issue for parents with SCI. "My needs for adaptation changed every time my daughter's development changed," Laura said. Now her daughter is four, and behavioral issues are more of a problem than the mechanical issues of infancy, such as carrying or lifting a baby. "The biggest challenge in my life has been parenting, not being paralyzed," she said.

2.4. Parenting Videos

Spinalpedia posts the following Parenting videos:


2.5. Parenting While Paralyzed

See Colby's Parenting While Paralyzed Facebook page and blog where you can not only follow Colby's progression back to an active live after sustaining quadriplegia but also ask any question you like of Colby. She is very open to addressing any potential SCI-related subject.

2.6. Resource Centers and Online Support


Andre Sobel River of Life Foundation
The Andre Sobel River of Life Foundation enables single parents of children with life-threatening illnesses to care for their children full time by relieving financial burdens when other resources are exhausted or unavailable.

Beach Center on Families and Disabilities
The Beach Center concentrates on families and disability. Their research projects are designed to build a more responsive community and strengthen the motivation, resource, and skills of families. They work in the areas of parent to parent mutual support, fathers, friendships, empowerment, transition planning, family-centered service delivery, family support policy, and abuse and neglect of children with disabilities. Products resulting from our research are knowledge-based and family-friendly.
 
Disabled Parenting Project
The Disabled Parenting Project (DPP) is an online space for sharing experiences, advice, and conversations among disabled parents as well as those considering parenthood. The DPP also serves as an information clearinghouse and interactive space for discussion and connection.

FacingDisability.com
Connects families who suddenly have to deal with a spinal cord injury with people like them who have already "been there" and "done that." It's a first-of-its-kind Internet-based effort to collect life experiences surrounding spinal cord injuries and bring them to the world.


Family Adjustment to Spinal Cord Injury (pdf)
This booklet addresses some of the concerns and experiences which the family of a person with SCI may experience. It focuses on some of the initial questions and concerns loved ones may have about the injury and feelings that families experience.


National Family Caregivers Association (NFCA)
NFCA is a nonprofit membership organization whose mission is to improve the overall quality of life of America's 18 million family caregivers, regardless of their relationship to the person needing care, or the specific illness or disability being dealt with. NFCA was started to improve the quality of life for all caregivers by providing information, educational materials, and advocacy for their cause.

National Resource Center for Parents with Disabilities
This center operates under the auspices of Through the Looking Glass, an agency that offers services to families in which one or more members has a disability or medical issue. Their focus is on areas of custody, pregnancy & birthing, adoption and adaptive parenting equipment. Publishes newsletter, Parenting with a Disability

PACER Center
PACER (Parent Advocacy Coalition for Educational Rights) is founded on the concept of Parents Helping Parents. PACER serves families of children and adults with disabilities and is staffed primarily by parents of youth with disabilities, and by persons with disabilities. PACER's programs help parents become informed and effective representatives for their children in early childhood, school-age and vocational settings. This site provides information about laws, resources and parents' rights and responsibilities and local groups nationwide.

Parents with Disabilities Online
This web site offers support and resources to parents with disabilities, a person with a disability who is planning to become a parent, or a nondisabled partner of a disabled parent.

3. Resources for Siblings

3.1. Guidebook for Kids Dealing With a Special Needs Sibling


The Other Kid- A Draw It Out Guidebook for Kids Dealing With a Special Needs Sibling
The Other Kid- A Draw It Out Guidebook for Kids Dealing With a Special Needs Sibling is a workbook for children with a special needs brother or sister. The workbook invites kids to read, draw, and write about the anger, sadness, frustration, confusion and love that comes from loving a sibling with a serious illness or disability. The Other Kid is available in both English and Spanish.

3.2. Sibling Support Project

Sibling Support Project
The Sibling Support Project is a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.