The first “networking / social” meeting of the HCSNT group on May 20, 2009 was attended by about a dozen parents (I don’t think everyone signed the attendance sheet). There were a couple of new people who heard about the group through word of mouth, so our numbers are slowly growing! The age range of children represented was quite large – we now have in a group a parent of an infant as well as parents of adults (“children” who are twenty and thirty years old).
Some of the main discussion points were as follows (thanks to Marcy B. who took the notes of the meeting!):
The main question asked was “What do you hope to get out of being part of this group?” and the answers seemed to concentrate along two lines: 1) connecting with other parents to exchange information, experience, and offer advice; and 2) working with Harvard to gain recognition and help the administration recognize the unique needs of the group.
One parent, a single mom, was glad to see this group form and meet during lunch break because as a single parent she cannot attend meetings and workshops in the evenings and on the weekends, so meeting during the day is the only option for her to connect with other parents.
Other participants were saying how glad they were to meet parents with the same or similar challenges and were looking forward to networking with one another.
Some of the ideas on how to work with Harvard better included trying to work more closely with the Office of Work / Life Resources to announce the meetings. However, that also raised the question of whether meetings organized or sponsored by the Office of Work / Life Resources can be open to students, alumni, retirees, and other Harvard affiliates. Another question was whether the presence of an Office of Work / Life Resources staff member would inhibit participants from freely speaking their mind.
Some parents raised a question on whether the group could come up with ideas on how to raise special-needs awareness on campus and whether and how Harvard might want to support this group of parents of special needs children, especially in the current economic climate.
Another question discussed was how often the group should hold workshops and social meetings and most parents agreed that it would be good to alternate – hold a workshop with a guest speaker one month, a social meeting the following month, then another workshop the month after that, and so on.
The group also decided that it would be good to have an online discussion forum where parents could talk without having to wait a month or two for another meeting.
Among other topics discussed were:
Summer Programs – in response to a question on where to find information about summer programs that support “atypical” children and provide services that prevent regression over the summer, other parents suggested:
Listing of Summer Camps for children with special needs on Harvie (you need a Harvard ID to log in to see that page)
School issues – a couple of parents were in the process of reviewing an IEP (Individualized Education Plan) and were expressing their frustration at not being able to get the right services for the child, because the school claims there is no delay and no services are needed. This seems to be more likely to happen if a child is doing well academically but has poor social-pragmatic skills or undetected language deficits (e.g., children who can read above grade level but have difficulty expressing their thoughts verbally or paraphrasing what they’ve read) or when a parent is inadvertently “masking” children’s academic difficulties by putting in a great deal of time helping children with homework. There are also particular challenges of dealing with school systems if a child has mental health problems.
As part of the discussion the following resources were mentioned:
Filed under: Notes from meetings