Tuesday, July 15, 2008

Parents take over the blogosphere

I really want to know more about what it’s like to be a child with a disability so I’ve been keeping my eyes peeled for blogs posted by children/teens/young adults with disabilities. NICHCY (the National Dissemination Center for Children with Disabilities) has a special section on their website just for kids with disabilities and one page provides links to a number of pen-pal webpages where kids with disabilities can connect with one another. Unfortunately, none of these sites publicly give voice to children’s varied and valuable experiences. Can anyone point me in the right direction?

The next best thing is looking at what parents are saying on the web. Many parents feel some isolation because the special needs of their child take them away from usual face to face social interactions with those in their home communities. But it seems that a lot of parents are getting great use out of blogging because it’s a community they can tap into 24 hours a day, 7 days a week. The other day I read about Contact a Family, a charity in the U.K. that is connecting parents of children with disabilities through sites like Facebook, MySpace, and Second Life (Speaking of which, does anyone know of any disability organizations like this in the U.S.?). It stated that in fact, “mothers, who are often the primary carers for children with disabilities, are now among the biggest users of social networking sites,” because they can share their stories and support one another.

In this online community of support, parents get to authentically voice their own experience and that of their children. For example, I found Elisabeth’s mom who blogs about raising her 14 year-old girl diagnosed with cerebral palsy. I really enjoyed a recent post describing the transition of her daughter from child to teen. Check out this excerpt:

“From her play stuff to the stuff she wears, we're easing into "teen hood" slowly getting rid of the "baby stuff." Her habits, preferences, or her growth chart hasn't changed much since she was 7 or 8 years old so a lot of the stuff isn't age appropriate. What has changed is her taste in music. She loves drums, guitars, and shakes her head to the rhythm of songs she really likes.”

Elisabeth’s mom also shares with readers her own personal fears for her daughter as she gets older, fears which many other parents of children with disabilities likely experience:

“We're talking about a fear we have that what is rightfully theirs will be taken away….We fear they will be seen as a burden or an object of pity. We fear people who will not treat them "wholly" or begin making decisions on their behalf like they did with Terry Schiavo.

How will they know my daughter climbed Half Dome in Yosemite or packed through Many Glacier and saw a Grizzly? How will they know she camped on Assateague enduring a million hungry mosquitoes just to hear the ocean roar at night under an evening sky crowded by twinkling stars. Will they care that she felt a stingray brush up against her ankle near the equator or sat in photos with the local celebrities? Will they know that making bubbles in a pool makes her laugh hysterically and sad music makes her cry? How will they see her for who she really is?”

Parents are able to be powerful advocates for their children, especially within the education system, and many are speaking up about their concerns. Elisabeth’s mom has a valuable commentary on the debate over mainstreaming vs. warehousing children with disabilities. She says,

“not all children benefit from mainstreaming, but this information is not presented to parents. In some cases, mainstreaming in the classroom has actually interfered with the individual child's special education progress. Unfortunately, because there are no alternatives for children or because these alternatives are not supported by the school district what most children settle for in the form of the mainstreaming theory has turned out to be nothing more than babysitting services or "warehousing" their child's needs until the school day is over.”

Jodie Reimer, who blogs about the day to day of raising her son with down syndrome, has a post on what an IEP is and readers’ comments are very telling as to how most parents feel about the current process.

“Here it is in easy-to-understand, non-government speak:
It is a meeting that special education students have once a year. Everyone who gives services to the student is generally in attendance: teacher, physical therapist, speech pathologist, occupational therapist, and many more. There is usually also someone there representing the school district, parents, school psychologist, could be just about anyone (parent's attorney?)At this meeting a document (contract?) is created which spells out what the IEP team would like the student to learn. It has goals and objectives. Blah, blah, blah.IEP meetings can be very intimidating, especially if you are the only one wearing jeans.Anyone else want to add their input?”

JoeyMom, who shares her personal tales of raising her 3 children, one of whom is autistic, wrote a humorous post about IEPs. Here are some excerpts:

"Being a parent at an IEP meeting is kind of like being a passesnger on a plane. Normal, reasonable people know that when come onto the plane, you make sure your luggage fits in the overhead bins or under the seat in front of you. If you need a seatbelt extender, you request one. You stay seated when the stay seated light is on. You make sure smoking is not done in the bathrooms, your food and beverage choices are made reasonably, and thus the flight goes smoothly. You need to have a general idea of how the emergency exits work in case there is a problem. However, on an IEP Flight, you as the passenger are also expected to understand how to fly the plane, serve the other passengers, and have full knowledge of how to maintain and even fix mechanical and other problems mid-flight…The pilot won't set course or work the instruments unless you specifically request that s/he do so, and then often says they don't have the resources for working the controls anyway, and besides, do you really NEED to work all those buttons, levers, and gauges? Can't you see front the windshield where you are going? When you go to find resources to help, you find a flight simulator; but you soon find it is either for an outdated cockpit, a simplified cockpit, or when you go to actually request the controls be worked properly, you are told that you just had simulator training, the pilot has had real flight time! So you try to sign up for flying lessons. Now you're told that you're still just an amateur. But they still won't work the controls unless you specifically ask them to do so, and say exactly what to do and exactly when. Oh, and your flight is already departing from the gate. And if you don’t do all of this correctly, of course you will crash. Oh well, sucks to be you.
Parents have a unique and invaluable perspective on the public education system and how it is or isn’t meeting their child’s special needs. I wonder to what extent researchers and evaluations of the current special education system are taking into account the parents’ viewpoint?"

I have yet to create my own “blogroll” listing my favorite parent blogs so far, so take a look at what Matt of the Beach Center on Disability has compiled on his blog.

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