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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
Parents can always be an advocate for other people especially to kids…Hmm..I am sure this can remind a lot of people especially parents…Thanks!
I like this idea, but wouldn\’t be able to contribute. Tweetchat requires you to give them permission to send tweets on your behalf; I allowed another service that same access and it was a disaster! Spamming and rogue tweets all over the place! Good luck with the endeavor! I hope it\’s successful!
Hey there – the Tweetchat already happened but you can sure join the discussion here at the Cafe … did you have some ideas? How about you leave another comment and let\’s get some great ideas flowing from everyone! I\’ll do a followup post and highlight ideas that are commented here!
Sorry I didn\’t respond sooner….my computer died a very sudden death. We just got it back today!!! I agree with you that while we as well as outsiders see our situation as \”stressful\”, it does become our \”normal\”. The level will fluctuate depending on the day but we maintain a constant level of stressful alertness. Like anything else in life, you adapt to your environment and your mind and body figure out a way to cope with the stress level. (That and medication or a cocktail or two at the end of the day). Seriously though, since my first one came out almost 3 months premature, I have hit the ground running, doctors, therapists, evaluations, schools, research, research, research. It never seemed daunting to me, I don\’t know why. I just \”knew\” what I had to do. Same with my second little squishy baby love. I saw the problem early on and just \”knew\”. Again, hit the ground running, and still going. I do get tired though. It would be nice to just chuck it all for a bit. I am babbling, sorry. Anyway, that\’s my two cents worth.
I\’d be lost without my computer – lol – you bring up some great points.
It\’s amazing, sometimes, to look back on what you have done just because you knew no other way. Know what I mean? No matter the bad days, the self-pity days (we all have them, right?), the ups and downs … through the years we tend to find our new normal and just \’go\’ with it.
I think there\’s a lot to be said for folks with different personality types responding to the stress differently as well – for me, I ebb and flow … what I mean is that I try my hardest and feel I do very well much of the time, mixed in with days I would love to do over, appointments I wish I had made earlier, records I wish I had kept better … which goes along with my personality. I\’ve never been a naturally organized person. More like naturally ADD lol.
Do you think personality types play into how well we pick up the advocate mantel?
Absolutely! I have one friend who I patiently \”chatted\” about my kiddos issues \”hoping\” she would take the hint about her kiddo, after 2 years, she did. Some people just don\’t want to see it, some people lose their sh!#$, some just walk away and leave, and then there is the rest of us, just pluggin\’ away one day at a time doing the best we can on that day. Nuero Typical people can get kinda squirrly around me and my kids. They seriously do not have a clue of how to \”deal\” with us. Most of the time, its just pity looks and \”the unspoken, thank g-d I don\’t have talk to her that often\”. They certainly don\’t get my sense of humor or why I mainline Red Bull all day! But I really get a chuckle when they start bit@*ing and whining about their stressful days, of having to make dinner and go to the kids soccer practice (gasp, omg right?) That\’s when I realize, G-d knew to give me my children, because if they went to those other people, they wouldn\’t be able to adapt and handle it the way my husband and I have.
I agree parents like me can be an advocate to support other parents and to feel them they are not alone in the battle.