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Help for Parents Caring for Children with Disabilities

New BU website shares stories, resources

10

Most parents are familiar with the stresses of child rearing, but there is a special set of tribulations known only to parents of children with disabilities.

A 2009 study by researchers at the University of Wisconsin–Madison found that the physiological and psychological toll on mothers raising autistic children is significantly greater than that on mothers of children who with no disabilities, and that the chronic stress experienced by mothers of autistic children is similar to that of combat soldiers.

Parents of children with disabilities, for example, face a host of questions that most parents never have to address: Should I set up a special needs trust? How can I help my son or daughter navigate the confusing world of dating? Will my daughter ever be able to live on her own?

To help answer those questions and many others, a group of University faculty and staff members has launched the website Parents of Children with Disabilities. The site, which requires a BU Kerberos password to log in, steers readers to resources and services and offers parent-to-parent advice for those at the University with disabled children.

One of the driving forces behind the site is Linda Wells, dean of the College of General Studies, whose 30-year-old son Dominic has Down syndrome and is on the autism spectrum.

“This website is an easy way for parents of disabled children to connect and to realize that they are not isolated,” says Wells. “It’s helpful just to be able to talk to someone else. Parents, regardless of their child’s disability, face many of the same issues, like their child’s independence, education, and employability.”

The idea for the website came to Wells after she talked with a colleague whose daughter is disabled. He shared his family situation and feelings of stress and uncertainty.

“As I walked away I thought, we ought to be able to do something within BU,” says Wells, who will step down from her position as dean at the end of spring semester. “We could build something where parents could share their path and their choices, and the network would be especially useful for parents who have younger children.” Wells will continue to work at the University as an advisor on student career development and alumni relations.

Wells has served on Down syndrome advisory boards and is a member of the Greater Boston Arc, the Boston chapter of a national organization that helps people with intellectual and related developmental disabilities and their families. She took her idea of a parent network to Provost Jean Morrison and other deans, who offered their support. She then enlisted the help of Stephen Burgay, BU’s senior vice president for external affairs, the father of a 21-year-old son with Asperger’s syndrome. Wells and Burgay came up with the idea of posting video testimonials on a BU website, and they asked colleagues if they would be willing to share their stories.

“We wondered how we could let parents know they have colleagues that have been dealing with a similar set of issues and might be able to provide support or advice,” says Burgay, who is on the board of directors of the Asperger’s Association of New England. “There is a group of parents on campus who are very knowledgeable about this topic, and we wanted to give people the opportunity to identify parents in a similar situation. That’s where the website and the videos came from.”

Wells says the site, which took months to create, successfully personalizes parents’ stories. “The videos help put a face to a name and show that we are approachable, and that way people are more inclined to reach out to us,” she says.

Each parent also shares a list of organizations they’ve found helpful, such as the state’s Department of Developmental Services, special summer camps, and financial relief funds.

The site currently features videos of five parents, filmed by BU’s Marketing & Communications department, and Wells and Burgay hope that more will choose to share their stories. The site also offers the counseling services of Karen Brouhard, a Faculty & Staff Assistance Office counselor, and Kimberly DelGizzo, director of the Center for Career Development.

In her video, Wells shares stories of Dominic’s experience in school and his “mischievous” ways. “We’ve always taken it one step at a time,” she says. “I would be eager to talk to people and listen to people and to say, this is what I’ve done, and mostly to hear what people’s worries are.”

In another video, Beverly Guiry, director of project management for Information Services & Technology, discusses her daughter’s struggle with a seizure disorder and the joy she felt when her daughter found a job.

“This is a journey and at different ages my child has had different issues to face,” says Guiry. “It’s hard being in a different world and not knowing many people who are in the world we are in. My child is older now, but if this website had existed a few years ago, I would have used it to reach out.”

Parents interested in sharing their stories on the website should contact Linda Wells at lwells@bu.edu or Stephen Burgay at burgay@bu.edu.

10 Comments
Amy Laskowski

Amy Laskowski can be reached at amlaskow@bu.edu.

10 Comments on Help for Parents Caring for Children with Disabilities

  • MRO on 04.16.2013 at 9:28 am

    I’ve been looking for something like this and will certainly be checking it out. Thanks so much.

  • Sarah on 04.16.2013 at 10:42 am

    Do they have any info from the children themselves, or from adults with disabilities who have already grown up in that world?

    Not that this is the case for these parents (I don’t know), but often parents of kids with disabilities (who are not themselves disabled), get caught up with each other and seek advice from each other and doctors and friends and all kinds of other non-disabled people, but they don’t actually ask the adults in the world who have autism, Down syndrome, CP, etc. what was helpful to them growing up, or what was really detrimental to them. And of course, every person’s version of a disability is different, but their perspective is still relevant, and possibly more so than anyone else’s since they’ve actually lived through a similar situation to the child, whereas non-disabled parents and doctors have not.

  • Sam on 04.17.2013 at 6:58 pm

    Nice to see these types of communities self-organizing. Is there a directory of other, similar types of BU support groups?

  • Emily on 04.25.2013 at 7:02 am

    Please next time use people first language!

    • Sigh on 04.25.2013 at 11:34 am

      What you’re looking for is deliberate circumlocution. It negatively affects sentence clarity and introduces arbitrary ‘rules’ to speech that are really unfounded. That said, almost all references in both this article and the site (even its name!) use people-first language so I don’t even know where the complaint is coming from.

      Here’s the National Federation of the Blind’s opinion on people-first (hint: it’s not in favor of it): https://nfb.org/images/nfb/publications/bm/bm10/bm1005/bm100509.htm

  • Louise Valente on 04.25.2013 at 10:53 am

    1 – In case you don’t know what Emily means, people first language is the difference between “autistic son” and “son with autism.” I see several places that you use this phrasing, and would encourage you to use it even more habitually. It can make writing more lengthy, but is a reminder that a son with autism is a son first, and can also be a son with a passion for the Red Sox, a son with a voracious appetite, etc.
    2 – I hope that you are getting the clinicians from the Sargent Speech Pathology program involved in this – as a speech pathologist, I would have LOVED to participate in this program as part of my undergrad/grad degree.. Most of us also have relatives/friends/parents of children with disorders that could add tremendous wisdom. GREAT JOB, Dean Wells and team!!! Yet another awesome program from BU!!!

  • Anon on 04.26.2013 at 9:13 am

    Why does the website require a BU Kerberos password? Why not make it available to the public?

    • Scott on 04.28.2013 at 4:01 pm

      Having helped create the website, I can answer that the participants’ contact information along with their personal stories resulted in the need for password protection. It makes sense given that the website’s purpose is to connect BU faculty and staff with each other and not to outsiders.

  • Bettina Corbitt on 06.14.2013 at 5:29 am

    Hi my name is Bettina, but everyone calls me Tina. I am a 33 year old mother of four. A ten year old son who is 10, twins boy and girl who will be five next month, one of whom has special needs, the other twin may have aspergers, last but not least there is my four year old daughter who keeps me smiling when all I want to do is cry. My ex-husband and I are no longer together we have been divorced for five years now and trying to get back together going back and forth in a uncontrollable relationship has not been easy. I love my children and wouldn’t trade them for anything in the world. I just want help on finding an advocate someone who can walk me through through the challenges of trying to help my twin son who doesn’t seem to know how to follow rules, or fit in socially, or stop obsessing over certain things. It’s much more to him, but I can’t help but to cry to think, why can’t everyone understand him. Why is it that he has to control everything , playtime, every conversation, he also has some very good qualities as well don’t get me wrong, but the fighting with his brother and younger sister really hinders a lot of things the family has a hard time being able to do because of his out bursts. Then there is my beautiful twin daughter who for lack of oxygen at birth after it took the medical physician 28 mins to get her out, the result was brain damage my daughter has cerebral palsy. And so many more diagnosis that I would be writing for a while. My daughter lived at home up until age 2 and has been in the facility now for three years, my goal is to brig her home. I really need some advice.

  • Amy on 07.31.2014 at 9:59 am

    Pleased to see this. If you have the bandwidth, you might consider opening the language and format up to address *families* with children with disabilities, instead of just parents. As you know, the whole household is affected. As an adult with an adult sibling with disabilities, it would be great to have a resource on how to support my parents who are still supporting my sibling.

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