How do we Advocate for our Child with Special Needs?

Without Breaking Down a Bit Inside?

I am joining the #HCHLITSS TweetChat tomorrow night at 8 p.m. EST, where we’ll be chatting about “Parents as Health Advocates.” I was pleased to be asked, and thought, ‘what a great way to open up discussion here at the Cafe on Advocating for our children with special needs.’

The #HCHLITSS Chat is “The Health Communication, Health Literacy, & Social Sciences” Tweetchat, led by RV Rikard and Kathleen Hoffman, PhD MPH and aims to encourage discussion about the intersection of health, communication, and the social world.

Parents as Health Advocates – a Special Needs Parenting Discussion

When Kathleen tweeted (and DM’ed me!) on Twitter, asking if I would like to be involved, I was excited about the opportunity, and then we emailed back and forth about the topic idea … and I want to make sure we continue to discussion beyond the Chat as well as let my readers know they can catch the chat if possible.

So “Parents as Health Advocates” sounds a bit formal – what’s it mean? Basically, we would like to tweet (chat) about the harder realities of being advocates for our amazing kids. I have two points I want to discuss further:

One of the things I like to stress is that it is NORMAL to sometimes be overwhelmed by the responsibilities we have as special needs parents, but that pressure never really goes away, you just learn how to deal with it better over time. One of the problems with advocating, as parents, is that it is easy to feel like you can never do enough, but taking the first step is usually the hardest.
The other thing is that, because so much depends on our involvement in our kids’ lives, we have what amounts to a full-time job (or two!) in being the best parents (and nurses, advocates, chief diaper changer …) and dealing with that stress within a world that discounts what you do is hard if not impossible sometimes.

I work online after years of trying and failing to hold down a full-time job, usually even a part-time job. You have so many other responsibilities, and the rest of the world keeps on going when you are dealing with an emergency with your kids, but we, unfortunately, don’t have that luxury. The rest of our lives get put on hold so we can deal with the number one responsibility on our plates, which is dealing with our kids (or hubby) with special needs.

So here’s the deal, I can be a part of the TweetChat (and I’m excited to do that) but the discussion needs to go just a bit beyond Twitter, and it needs to go beyond this one post at the Cafe. I would like to encourage the special needs blogging community to take up discussion of this topic, and to join me back here, with other parents, so we can discuss this further.

Now it’s your turn! Be a part of the Special Needs Parenting Discussion on the Toll of Advocacy …

If you want to join the TweetChat: Kathleen recommends (and I 100% agree) using http://tweetchat.com/ as it allows you to filter comments by the hash tag #hchlitss and the #hchlitss hashtag is automatically added to your Tweets in TweetChat.

Give us a comment below about what you would most like added to the discussion in our Tweetchat.

Comment Below: Tell me about your greatest challenge in adjusting to your role as advocate for your child with special needs … are you still adjusting? Have tips to share? Want to blog about it further?

Reblog this idea: Further the discussion on your own blog, on your Facebook Walls, Google+ Pages and Streams, on Twitter. If I find enough interest I’ll put together a small blogging kit with a sweet button, some post ideas, and links you can include or look to for further information on the idea (leave me these kinds of resourceful links in the comments, would you?).

For #Autism Awareness #hchlitss starts back w/ “Parents as health advocates” w/@KatrinaMoody Thurs.4/12 at 8pm ET/5pm PT #parents Pls RT

— Kathleen D. Hoffman (@kdhoffman2) April 12, 2012