Tips for Creating a Networking Group for Parents of Children with Special Needs at Work

The reason it’s been very quiet on this blog is because I’ve been very busy elsewhere – I have been working on creating a networking group for parents of children with special needs at the place where I work.

I am happy to report I’ve made a good start!

When I posted a message on one of the newsgroups I belong to mentioning that I “managed to convince HR people at my workplace to help create a networking group for parents” I was contacted by Joan Celebi, Ed.M., CLC – a personal coach specializing in helping parents of children with special needs. You can read more about her at: http://www.specialneedsparentcoach.com/. She asked if I’d be willing to share how I managed to accomplish the creation of the group because one of her clients was trying to do that as well. It turned out she lives pretty close, so we met for lunch and I told her what I did.

Afterward I thought it would make a good blog post, and so did Joan. But it turned out creating a networking group is more time consuming than I expected, so I have not been able to get to it for a while. But here it is — I hope maybe others will be able to use this information as well.

Tips for Creating a Workplace Networking Group for Parents of Children with Special Needs – Part I – Do your prep work

The reason I wanted to create a networking group for parents of children with special needs at work is because I knew that at a place that employs over 16,000 people there’s got to be other parents like me and I wanted to meet them.

According to Massachusetts General Hospital’s Center for Child and Adolescent Health Policy, “In any given company nationwide, 8.6 percent of employees care for children with special needs.” (“Children with Special Needs and the Workplace: A Guide for Employers”, page 7, at http://massgeneral.org/children/professionals/ccahp/empl_benefit_study/pdf/EmployerGuide.pdf) So if you work for a company with 100 employees, statistically eight of them have children with special needs / disabilities.

Try to find other parents on your own

If you frequently interact with a lot of your co-workers, you can try to find some other parents on your own. Naturally, you can’t ask directly “You don’t happen to have a child with special needs, do you?” But if you pay attention you might see the clues…

Pay attention to parents who don’t say much about the child’s accomplishments in sports and hesitate what to answer when asked whether the family is busy on the weekends going to soccer, baseball, or hockey. That might mean (as in our case) that the kid is not good at team sports. It might be a physical disability, but it also might be autism or ADHD.

Pay attention to parents who never brag about their child’s grades and hesitate what to answer when asked how the child is doing in school. That might mean a child is not doing well, and might have a learning disability (recognized or not).

Pay attention to co-workers who do not attend company family picnics even though you know they have children. If a child has behavioral issues, autism, sensory issues, ADHD, or other neurological problems, big events like that are simply overstimulating and more torture than pleasure. Plus the parents may not want their co-workers to see their child in “one of those moods.”

Pay attention to co-workers whose preschoolers at the company picnic quietly dig holes in the dirt the entire time, not interacting with anyone, not even lifting up their head to say “Hi” when approached.

Pay attention to co-workers whose young children at the company picnic run around wildly not responding to their exasperated parent’s pleas to “stop and sit down quietly for a moment.”

When I see other parents embarrassed by their kids’ atypical behavior, I usually smile and say “That’s all right. My kid does (did) that too. He’s (very hyper / has social difficulties / is very clumsy). [shoulder shrug] I’m told it’s neurological.” That might give them enough information to open up and start talking.

If you find another parent with a child with special needs, or better yet a few parents, it will make it easier to make your case to create a networking group. Until the first workshop, I was wondering if I’m crazy and the whole thing is going to blow because nobody will show up. Eight months later, we have over forty people in the group and at each workshop there’s been at least one or two new people showing up.

Carefully examine your company’s HR structure

Small companies might have just one department doing all the hiring, benefits management, etc. If that’s the case, that’s where you need to go.

Larger companies might have a “hiring” unit separate from their “benefits” unit. Some will also have a “family and work integration” unit.

Look for a place that has the ability to contact all employees, preferably somehow connected to employee benefits, but it could also be the Internal Communication Office that sends out the Employee Newsletter.

At the place where I work there is a specific unit called “Office of Work / Life Resources” and that’s where I went. I found out who the manager / director is and requested a meeting.

Request a Meeting

Think carefully if you really want to do it. First of all, from that point on you’re going public with the information that you have a child with special needs. You have to be absolutely sure that you’re okay with that. Second, unless you’re a natural leader and a community organizer, organizing a bunch of individuals into a group will be very time consuming.

Here’s what I wrote to the director of the Office of Work / Life Resources. Feel free to use all or some of the language. I know it’s a bit lengthy, a shorter letter might be more effective. The goal is just to get a meeting. That’s when you’ll present your case in full.

Dear [name],

I am looking for help in creating at [company name] an employee-led support group for parents of children with special needs – children with physical and/or neurological disabilities who are receiving services and therapy from the Early Intervention programs or have an Individualized Education Plan (IEP) in school.

I apologize if you are not the right person to contact in this matter. If you happen to know the correct procedure for creating an employee-led support group, I would appreciate your advice.

According to the Massachusetts Department of Elementary and Secondary Education data, over 16% of students in K-12 are receiving special education services. That number does not include children who receive Early Intervention.

I do not know how many employees at our company have children, but even if only half of them do, then statistically nearly [number of employees x 0.5 x 16%] employees have children who receive special education services.

Having a child with a disability creates tremendous stress on the parent. Many parents feel overwhelmed and lonely while they’re trying to come to terms with the diagnosis and deal with a multitude of feelings including fear, shame, guilt, and despair, then look for more information about the condition and ways to help the child, try to learn about the special education law, medical insurance definitions, and spend quite a bit of time negotiating with the authorities (state, health insurance provider, or the school) to make sure the child receives necessary services.

A [company name] group for employees with children with special needs would offer these parents a chance to connect with others who are or have been going through the same process and dealing with similar issues, and would provide a forum for parents to share information, offer advice, and provide emotional support.

What’s more, the creation of such a group would not only contribute to the members’ well being, it will also result in a strengthened sense of being part of community and increased loyalty to the workplace where one can find understanding and support.

Please let me know what steps need to be taken to start this project – who needs to be involved, who needs to give permission, what procedures and rules need to be followed, etc. I am willing to do all the “legwork” but I do not know where to start. I’d be happy to meet with you at your convenience to discuss this matter.

sincerely,
[name]

If you don’t get a response right away, send a reminder in a week or two. If an e-mail reminder doesn’t work, try calling. If you get a voicemail and your phone call doesn’t get returned, stop by that person’s office and ask for an appointment.

What if they say “no” right away?

They might say “no” right away. They might say that in these difficult financial times and scarce resources it’s not possible to start a new project. Explain that you understand and that you are not asking to start a new program or benefits, you’re just looking for help in finding other parents who have a similar situation.

What if they say “yes”

If they say “yes” right away, that’s awesome! Maybe they have someone with a disability in their close or extended family and will be very supportive. You never know.

The next step will be “Part II – Present Your Case” but that’s a whole other blog post.

Parenting Special Needs Children and Work

Boston Globe ran recently a two-article series by Maggie Jackson about working parents who have children with special needs. The first article, “A parental juggling job: Workplace stigmas add to struggles of people with disabled children” was published on December 14, 2008. The follow-up, “Bosses responding to special needs”, appeared on December 28, 2008.

Jackson writes

“nearly 14 percent of kids up to age 17, or about 10.2 million children, have special healthcare needs, which is defined as a chronic problem that limits activities or demands extra healthcare, according to 2006 government data”

[...]

“In any given company nationwide, 8.6 percent of employees care for such children, according to Massachusetts General Hospital’s Center for Child and Adolescent Health Policy.”

According to the publication of the Massachusetts General Hospital’s Center for Child and Adolescent Health Policy titled “Children with Special Needs and the Workplace: A Guide for Employers”:

“As a result of managing family responsibilities, parents of children with special needs bring talents and skills to the workplace including:

  • Determination
  • Resiliency
  • Advocacy
  • Negotiation
  • Multi-tasking
  • Prioritizing” (page 3)

The Guide also cites a 2002 National Study of the Changing Workforce conducted by the Families and Work Institute according to which:

“Employees with access to supportive work-life policies and practices are more:

  • Satisfied with their jobs
  • Committed and loyal to their employers
  • Willing to work hard to help their employers succeed
  • Likely to stay with their employers” (page 4 of the guide)

By the way, when I googled the title of the guide, I also found a very nice one-page brochure from the Boston College Sloan Work and Family Research Network, with links to an overview and briefs, statistics, and readings on  “Parents Caring for Children with Disabilities.” I need some time to go through all the info, but at first glance it looks very interesting and has a lot of useful info.

Jackson’s article mentions Ernst & Young and Raytheon as two companies that have a network of parents who have children with special needs.

The place where I work, a huge employer of over 15, 000, who has been on the 100 Best Companies compiled by the Working Mother Magazine doesn’t have such a group yet. I’m trying to create it but it’s a slow going. I do hope I succeed in the end.

In the meantime, I’m trying to find more information on other employers that might have networking groups like that. I would appreciate any leads.