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

by me on December 3, 2009

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.

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The IEP Process – Special Education Advice for Parents (Part I – The Beginning)

by me on March 8, 2009

Learning about special education is a daunting journey. I’ve been doing it for over four years now and I’m still learning. I can barely remember the very beginning and how confusing it all was. That’s why when I read a call from Karen Nowicki (an integrative coach) for tips for parents with children on IEPs, I responded, even though it was tough to make my response so brief to meet the 100 words limit.

Karen was gathering responses for an article for Root & Sprout (a site I’ve never heard of until then) and has published her piece on IEPs just recently (update on December 3, 2009 – the site seems to have gone defunct since then).

When the article was posted, Karen wrote to me to let me know she received a lot of responses, and could not possibly include all of them, so I’m more than flattered that she did quote parts of my submission and included a link to this blog, even though I’m not anonymous any more. (I was planning to “go public” soon anyway, although I probably would not have published my name, just give the readers enough information that they would be able to find who I am.)

I’m also happy to be in the company of www.weddingsx3.blogspot.com, by Debbie Yost writing about mothering, family life & Down syndrome awareness; www.motheringautism.blogspot.com, by Pam Walsh, and on the same page that mentions www.wrightslaw.com, by Pete & Pam Wright, William & Mary Law School, Education Law Clinic & Special Ed Advocates, and www.LDpodcast.com, by Whitney Hoffman.

The first tip on how to prepare

Preparing for an IEP will require you to read everything made available to you by the school and everything else you can get your hands on to support your child’s rights to special services.

Is similar to what I wrote to her as well

Read, read, read – You have to know the law, your rights, and what the school is obliged to do for your child. There are several very good books on IEPs out there. My absolute favorite: Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide

The “Top Ten IEP Tips” from Carrie Gilmer and “Parent IEP Tips” from Eileen Mullin, are great too.

All that said, I tried to read this article as if I were a parent just starting out in this journey, and I’m afraid I probably would still not know what IEPs are all about and how to start the whole process, especially if my child was not in school yet and I did not know any staff from the district yet.

Most likely I would not understand the advice “Know and use IDEA 2004 laws and proper IEP procedure,” especially given the fact that the article does not explain what IDEA 2004 laws are. It is, of course, everyday language for parents of children with disabilities and in special education, but typical parents usually have never heard of IDEA (the Individuals with Disabilities Education Act), unless they work in Special Education themselves. And if they go searching for the term, they are most likely to get to the U.S. Department of Education web site, which is not very “beginning parent” friendly. (as I commented on in “IDEA (Individuals with Disabilities Education Act) U.S. Department of Education Web Site” from December 31, 2008)

The advice “Become an expert on your child’s disabilities” while extremely important, also assumes a parent knows what the child’s disability is. At the beginning of the journey, many parents may not even have a diagnosis yet and don’t know what to search for. In our case, the specialists disagreed on a diagnosis for quite a while. (as I complained in “Personal Introduction“ from September 2007)

So here comes:

Advice for Parents of Preschool-Age Children

When nearly four years ago my son’s private daycare teachers politely told us they won’t be able to “meet his needs” the following year when the number of children in the classroom was going from nine to fifteen and advised us to contact the local school district to see if he qualifies for special education services, I had to call a couple of places in the district before I found the right person to talk to. By the way, at that age “special education services” meant an “integrated” preschool with a comparatively low number of kids and a high number of teachers in the class, who can keep good tabs on everyone.

I know now that the place to start may not necessarily be called “Special Education Office.” In Massachusetts that’s usually called “Pupil Services.” If a district is large, the main office might refer a parent to a local school’s special education coordinator.

Whoever you talk to in that office will probably ask why you think your child should be evaluated and will ask for copies of any paperwork that would support that. They might ask for letters from the pediatrician and/or current teachers. It wouldn’t hurt if you wrote a letter too, listing all of your concerns, with examples. (I like to say things like “I am concerned about my son’s x y and z, because I have observed that …. Because of the concerns mentioned above, I am asking for ….”)

Starting the Binder

The day you first call the “Special Education” department at school is also when you should start a binder to document everything and where you start filing all paperwork, including the logs of phone calls.

I learned about the binder idea in a workshop “Getting Organized” presented to our local Special Education Parent Advisory Council by the Federation of Children with Special Needs. Until then I had been just simply keeping files in my file cabinet. But just about the same time I went to the workshop I found out I routinely ended up taking the files out of my file cabinet and lugging them to various appointments and meetings, where inevitably I was asked if these are originals or copies. I had to say “these are originals,” at which point they’d go and make copies, and sometimes, not often but it did happen once or twice, a page or two from the original would get lost.

Now I still keep the originals in the file cabinet, but as soon as I get any paperwork, I make at least three copies of the originals for the binder, one of which serves as the “pseudo-original” for copying, the other one is an extra copy I can just give out if necessary, and the third one is a “mark-up” copy where I write my comments.

I learned about the phone call log from what I consider one of the best books on special education — Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide, by Pam Wright and Pete Wright, founders of the Wrightslaw web site, which is packed with useful information. Until then it never occurred to me to create a written record of meetings and phone call conversations, but it’s a great idea, because couple months down the road you may not remember the day you called, who initiated the phone call, even if you remember who you talked to, the reason for the meeting or the call, and exactly what was discussed.

What I do now is a bit different than what the Wrights suggest — I write a follow up e-mail to the person I met with starting with “Thank you for taking the time to meet with me (talk to me) on (date) to discuss x, y, and z.” and including all the pertinent information about the conversation, especially if something was decided or agreed to during the conversation. I then print the e-mail and put it in the binder in the “Correspondence” section.

My son’s binder currently has the following sections, separated by labeled tab dividers (like the Avery(R) Write-On Tab Dividers With Erasable Laminated Tabs, 5-Tab, White):

  • Current grade work by date (the work he does at school that is being sent home)
  • Current year’s correspondence by date
  • Current year’s IEP
  • Current year’s progress reports, meeting notes, and data
  • Current year’s report cards
  • Last year’s correspondence by date (for the first couple of months of meetings in a given school year, after that I file it in an “archival” binder)
  • Last year’s IEP
  • Last year’s progress reports, meeting notes, and data
  • Last year’s report cards
  • Extra copies of documents (for photocopying, each in a separate plastic sleeve)

First meeting with the school (pre-IEP)

During the first meeting the school will probably hand you a lot of forms to sign consenting to various testing. The testing is supposed to assess the child “in all areas of suspected disability.” (IDEA Statue, Title I, B, 614, b, 3, B) The typical testing at preschool age usually includes

After all the testing is done, the school will (should) send the parents all results, with raw data and an explanation and recommendations for the future, and schedule a meeting to develop an IEP. At that point the school usually also asks (should ask) the parents to write a “Vision Statement” and “Parent or Student Concerns.”

The thing is – without knowing any information beyond the basic “Procedural Safeguards” and “Special Education Guides” that the school hands out, figuring out what to include in the “Vision Statement” and “Parent Concerns” might turn out to be a tricky homework. But that’s a huge topic, probably deserving a separate blog entry. I’ll try to get to it soon. (I’ve been very busy recently, hence the decline in the number of posts.) But I hope the above, nearly two-thousand word-overview somewhat covers the “What to Expect” part covering the very beginning of the process.

By the way, the tips I narrowed down to 100 words or fewer that I sent to Karen were as follows:

1. Don’t despair. Join a parent networking group if your district has one. In some states a Special Education Parent Advisory Council is mandated by law. It may be very active and working closely with the school administration or it may not. But it’s a great place to meet other parents who understand what you’re dealing with.

2. Read, read, read! You have to know the law, your rights, and what the school is obliged to do for your child. There are several very good books on IEPs out there. My absolute favorite: Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide.

I see networking and knowledge as crucial to the whole process. You need to learn about what you’re dealing with and since you’re not the first person starting on this daunting journey (even though it might feel like it at the beginning), connecting with other parents who’ve been doing it for a couple of years usually turns out to be very helpful for several reasons.

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Following the Web from "organic foods" to "hyperbilirubinemia"

February 8, 2009

What does it tell you about eating “conventionally grown” foods if your own health insurance plan includes in its newsletter a short article about eating “organic”?
Harvard Pilgrim’s Winter 2009 mini-magazine includes a brief feature titled “Eating Organic on a Budget.” (see page 11)
Now, if you read the “fine” print (the paragraph titled “A Guided Tour [...]

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Yopple eepee

February 2, 2009

We’ve been subjected to high-pitched chanting of “yopple eepee yopple eepee yopple eepee” for several days now and today during the 30-minute drive coming back from the auditory processing evaluation I finally found out what it’s all about.
Apparently one of my son’s classmates sounded out “people” as “pee-o-ple-ee.” That, repeated over and over again, of [...]

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Ethnic background and attitude toward Special Education

January 29, 2009

While I have known for a while that some parents will look the other way when a child is struggling and will not have the child tested because they’re afraid or ashamed of the “special ed kid” label, I had not realized that minority families seem to be much more wary of that, until I [...]

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Antibiotics and increase in symptoms

January 28, 2009

My son got strep last week and is on antibiotics until the end of the week. Interestingly, I don’t know if it’s because of the antibiotics, lack of exercise and fresh air (it’s either snowing or too cold to go outside), boredom, or what, but we’ve seen some increase in symptoms recently — much more [...]

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Connection between levels of fetal testosterone and autistic traits

January 28, 2009

I wanted to title this post “Would you want to know if your child might be autistic?” but after reading in the Guardian Prof. Simon Baron-Cohen’s response article titled “Our research was not about prenatal screening for autism,” I have decided to give my post a different, more neutral title, and closer to the title [...]

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Engineers, Hips, and Autism

January 23, 2009

The headline “Men who don’t find curvy women attractive ‘could father children with autism’” sounds just too weird to pass up. I found it through Google alert on a rather curious blog “What Sorts of People.”
The entry does not comment on the title, just refers people to an article in the Daily Mail Reporter, published [...]

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Change.gov is closed, whitehouse.gov is up(dated)

January 21, 2009

I slightly panicked when I went to change.gov today and saw only a plain-looking box referring everyone to whitehouse.gov. I was afraid all the links I created to change.gov in my previous posts were broken. (“Citizen’s Briefing Book at change.gov” from January 13, 2009, and “Citizen’s Briefing Book update” from January 20, 2009) But I [...]

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Citizen's Briefing Book update

January 20, 2009

The Citizen’s Briefing Book, which I mentioned in the post “Citizen’s Briefing Book at change.gov” was closed on Sunday, January 18, 2009 (see “Wrapping up the Citizen’s Briefing Book”  entry on the change.gov blog).
“Revamp the Javits Gifted and Talented Students Education Program” got only 210 votes overall and two comments. I was glad to [...]

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