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:

1. 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.
2. 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.

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

Teleclass Series with Autism Advocate about Family Dynamics

To Benefit The Temple Grandin, Eustacia Cutler Autism Fund

Wellness Talk Radio announced their Family Dynamics Teleclass Series begins April 12, and continues with classes on May 3, May 10, and May 17, with Eustacia Cutler and Wellness Talk Radio Host Kris Costello. Interested applicants need to register and pay $20 for each teleclass they want to attend, with the fees benefiting The Temple Grandin Eustacia Cutler Autism Fund.

Eustacia Cutler is a well-known Autism Advocate and also the mother of Autism Advocate Dr. Temple Grandin, and she will be speaking about Family Dynamics with Autism. The first class is on April 12 and will introduce the series, continuing with a May 3 teleclass about “Keeping and Strengthening Your Sense of Self.”

The Teleclass announcement calls Eustacia Cutler “a Visionary when it comes to looking at the Family as one of the most important component’s in the “Autism Equation.””

Autism and the Family Dynamic, about the Teleclass Series

Eustacia’s story was told in the Emmy Award-winning move Temple Grandin, and she will be exploring the importance of the family in that “Autism Equation.” She will also share her unique experiences of raising Temple during an era when Autism was not a household name.

The conversation will continue in discussing how the family identity is at risk after a diagnosis of Autism, and Cutler will talk about the steps you can take to “strengthen your own family.”

 The Teleclass Series Announcement says the Series will also Discuss:

• How to keep focused on and nurture your own “sense of self “
•  Supporting and nurturing siblings in the family with Autism
•  Tips on how to get out and stay out of overwhelm
•  How Eustacia recognized and supported Temple’s developing interests and encouraged her “gifts” and why this is so important
•  And we will also take time during each seminar to address many of your questions and concerns

How YOU can Attend!

The first class is April 12 at 6 p.m. and will discuss Family Dynamics overall, and you can purchase a ticket for $20 (or purchase a ticket for all 4 teleclass sessions for $80) by visiting the Teleclass Series with Eustacia Cutler purchase page.

BUT, you can also take a chance and enter the FLASH Giveaway I will be hosting for 10 tickets for 10 lucky attendees to go to the class of their choice from the series! Wellness Talk Radio Host Kris Costello has generously offered up the tickets for giveaway and I sure hope you guys are as excited about attending as I am!

[Flash Giveaway to Start April 10 at 10 p.m. and run until April 11 at 10 p.m. – ONLY 24 hours to enter and win in time for the first class!]