Special Needs Parenting Discussion: Parents as Health Advocates

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

Katrina Moody

I’m a Wife; Mom to 3 guys w/ARS, autism, epilepsy & awesomeness; Writer; Editor; Blogger; Advocate; Friend. NPO Founder: @therarelink @A_RAssoc

Website: http://katscafe.org

Twitter: KatrinaMoody

Tweet #fighting4answrs

Join the Lost and Tired’s Community #Autism Support Forums

Lost and Tired’s Community #Autism Support Forums

Here at Lost and Tired, my goal is to actually help people by presenting them with our real life experience as parents to three boys with #Autism. While our situation may be different from yours, we are all on the same journey. Something else we all have in common is that we all need help and advice from time to time. Personally, I like speaking to people who have actually been there, or are actually going through something similar.

I have found that this type of support helps on many levels.

For starters, talking to other parents is very non-clinical and much more personal. We can relate to each other in a understanding and non-judgmental way. What I find really cool about this is that you can openly speak your mind and not have to explain yourself.

Many of you are likely aware of the support group that I formed on Facebook. It’s the best support group on Facebook because there is no bullying and the community is very active.

Most importantly is that it’s private. This means that unless you are a member, you can’t see anything. This provides privacy and the ability to speak your mind without fear of repercussion.

In the year or so that I have had this group, things have gone very well and we have grown.

It was inevitable that at some point things were going to have to evolve into something bigger. Facebook is no longer sufficient for what I want to provide the community with.

What are the Community #Autism Support Forums and why would you want to join?

So one of my big plans for the year 2012 was to start an official Community Autism Support forum.

I’m very happy to say, that while many of my other plans have had to take a back burner thanks to recent events (the theft of our family van), the official Community Autism Support forum are up and running.

What does this mean?

Well, in a nutshell, it means the best Community Autism Support forum around, just got better.

This also means that you have an even better place to go and seek help from other parents that have been there. The new Community Autism Support forum are running on the latest version of vBulletin software which means you have tons or freedom to express yourself and your opinions in a much better way. You can embed videos, pictures and completely customize your profile.

If there is something you would like to see, let me know and I will do what I can to address it. I also have a group of moderators that help to enforce the zero tolerance policy on bullying. The Community Autism Support forum is a completely private group and only members can enter the forums. This helps to ensure everyone is free to say what they need to say, without fear of reprisal.

How do you access the Community #Autism Support Forums?

The Join the Community Autism Support forum can be accessed via the browser on your computer.

However, we live in a world that has gone mobile. I understand the need to support mobility and so in an effort to improve the accessibility and usability of the Community Autism Support forum, I have added Tapatalk support. Tapatalk is an app available for your favorite smartphone or tablet that gives you complete access to these forums from anywhere….

From this app you can create new threads and reply to treads as well. You can send and receive private messages as well as receive notifications of updates and new posts. This is a great way to experience the Community Autism Support forum while on the go. Also, the forums can be moderated from the Tapatalk app as well. So if a problem arises, I can address it from wherever I’m at, as can my team of trusted moderators.

This app is available for Android, iPhone/iPad, Blackberry and Chrome

Instructions for using Tapatalk with the Community Autism Support forum :

1) Download and install the app on your preferred device. This app is available for Android, iPhone/iPad, Blackberry and Chrome. You can use the links above to install via your computer. (Price on Android is $2.99, Blackberry is $3.99, iPhone/iPad not sure). There are also free versions, at least for Android that support ads.

2) Run the app on your device and search for “Autism Support”. You should find the forums and my logo.

3) You will be prompted to log in. Use your username and password that you created when you registered for the forums originally.

4) You can then use the forums via your smartphone or tablet.

Please let me know if you have any issues.

I hope this makes things a bit easier for everyone. My goal is to make this as easy and accessible as possible.

******Special Note******

Please take note that you will need to register and reply to the confirmation email before gaining access. This is done to prevent spam and help ensure everyones privacy. If it takes more than a few minutes to get your email contact me and let me know.

Please help spread the word about our amazing support group. We are always looking for new members and everyone is welcome.

So what are you waiting for? Simply click the banner below or click on the Community Autism Support forum page at the top on this site.

So without further ado, please allow me to present you with Community Autism Support forum

**Thanks for reading**

-Lost and Tired

Please join our Community Autism Support Forum

Rob Gorski

Father to 3 boys on the #Autism Spectrum. Author of lostandtired.com. I raise #Autism Awareness by creating dialogue and breaking the silence.

Website: http://lostandtired.com/

Twitter: Lost_and_Tired

Tweet #fighting4answrs

Family Dynamics & Autism Benefit & Teleclass Series with Eustacia Cutler

Teleclass Series with Autism Advocate about Family Dynamics

To Benefit The Temple Grandin, Eustacia Cutler Autism Fund

Eustacia Cutler Teleclass Series

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!]