BlogHer - special needs children - Comments

special needs mommies are special caregivers 2

zazupitts — Thu, 04 Jun 2009 09:48:21 -0500

hiya!

I like the fact that we are reaching out to mommies of special needs kids...they DO need to know they are not alone.

I'm not a special needs mommie -- but I see a lot of their comments and stories on the caregiving forums out there. They do feel isolated, since their story is often unique -- every child and family structure is different, after all. But they deal with the common struggles of caregiving: fatigue, burnout and resentment. And on top of that, guilt because they are not SuperMommies.

Please keep up this mission...and be sure to emphasize the empowering messages:

a) It's okay to NOT to be ALL things to everyone at once

b) Someone out there might have faced the same issue ...and might have some good advice on how to handle it. So reach out and ask!

c) It's vital to find acceptance of the diagnosis, because then you can be open to the peace and fulfillment that naturally follows acceptance

good luck!

Living in Caregiverland

www.Caregiverland.com

Headed down that path myself

Lisse — Thu, 04 Jun 2009 07:49:23 -0500

This is the first Backtalk I've watched. I've been a mom for 6 years, but I am just gearing up for the role of advocate. This felt like a bit of a pep talk, and I'm grateful for it.

- Lisse

@ Home in the World: International Adoption and Other Travels

I agree

CJENGO — Wed, 03 Jun 2009 15:57:29 -0500

Amzing post. As a fellow mother of a special needs child I agree with all you said. Thank you for sharing

Jenn

www.cjengo.blogspot.com ~ The pregnancy according to Jude; The diary of a baby and a stroke.

www.ourfamviews.blogspot.com

Can't miss the opportunity mention a few of my fave blogs/books

Lisa Stone — Wed, 03 Jun 2009 12:11:27 -0500

By/for parents of special needs kids -- and really all children:

Jenifer Graf Groneberg and her book Road to Holland. Amazing writer, beautiful insights on living with/around a child with Down's Syndrome.

Can I Sit With You by Shannon Des Roches Rosa and Jennifer Byde Myers. I've read with/given this book to our sons, ages 9 and 13 now, and they really got an enormous amount out of it.

Lisa Stone
BlogHer Co-founder
Surfette

BlogHer is non-partisan but our bloggers aren't! Follow our coverage of Politics & News.

Laura4687, you are so eloquent

Lisa Stone — Wed, 03 Jun 2009 12:06:21 -0500

What a beautiful and important comment. Thank you.

Lisa Stone
BlogHer Co-founder
Surfette

BlogHer is non-partisan but our bloggers aren't! Follow our coverage of Politics & News.

parenting special needs kids

laura4687 — Wed, 03 Jun 2009 10:14:37 -0500

I enjoyed listening to what all the parents had to say, and agree with all of it.

I am the mom of a 17 yr old daughter who has an extreme, persistent anxiety disorder and well as a learning disability. We are also legal guardians for our nephew, who is 16 yrs old, and has ADHD.

One of the things that wasn't discussed in backtalk conversation that I feel is so important to acknowledge is that grief that comes with a special needs child. At all different stages of development, as a parent, there is a process of continually letting go of the dreams or expectations that come with that age/developmental stage.

With my daughter being 17 yrs old I find myself in that process once again. My daughter can't deal with or do a lot of the things that some of her friends without a disability are able to do. And while many of my friends are easing back into life without constant parenting I find myself still as involved as I have always been.

I am grateful to be my daughter's biggest fan. I am grateful to have the ability and the willingness to stand in there and deal with whatever the day brings, and I am sad at times, that her life still looks so much like it always has. There are limitations for her that will always be there.

Thanks for the topic on backtalk... and all the references to other blogs from parents with special needs kiddos.

"Expecting Adam"

ajpassey — Mon, 29 Sep 2008 00:48:43 -0500

That analogy sounds so familiaar. Have you read the book "Expecting Adam" by Martha Beck? It's about her trip to Paris that ended up in Holland. I think it was in her book that I first encountered the comparison.

My heart goes out to you in your exploration of this "country" where you find yourself, your son and your entire family.

Thanks for visiting my blog. I look forward to trying your soup formula. I have hundreds of servings of beans (both canned and dry) that I've been thinking about how to serve to my family!

Amber

CraftingInspiration.blogspot.com

Well, I've thought about

MissSuzy — Thu, 31 Jul 2008 23:53:30 -0500

Well, I've thought about this a lot, as well. I once had my diary/writing journal stolen and used against me in a divorce. It was ugly and I was violated. This was before the days of blogging, and because the experience was so awful, I haven't written in a paper journal since.

I've even resisted blogging, but finally caved in a few months ago. I do write with a pseudonym, and I do write about some terrible experience my son has had in public school. I try to keep it anonymous. I'lll probably be "found out" at some point. I amy not be clever enought to write without a trace.

Frankly, I don't trust gubberment schools to have anyone's best interests in mind besides their own, and I can picture some employee gleefully and wickedly snooping through that poor mom's blogs looking for something they could use to nail her.

It's a real bummer and she'll not trust again any time soon. Her daughter is probably short of services she needs, too.

MissSuzy

www.introvertigo.typepad.com/licensetolove/

Thanks JUNOSMOM!

osoleomar48 — Sat, 26 Jul 2008 10:50:53 -0500

THANKS JUNOSMOM!... i think so about me too...I peruse randomly in the blogs daily (and not only in BlogHer) About this argument i'll wraiting the post very interested in the future( i will studing about now...) in my personal blog:Granny "BELARDA"

blogging out loud

junosmom — Fri, 25 Jul 2008 12:09:33 -0500

Cathy
http://www.lifetimelearning.blogspot.com

Very interesting. Yes, it is a dilemma, the need to be heard and receive feedback versus public exposure which could harm. As I peruse blogs randomly, I am struck by how many very talented and creative people write blogs. It has opened up many avenues for writing. Yet, it could be used against one, as it has been made public.

In that one case by case...it's all rigth!

osoleomar48 — Tue, 15 Jul 2008 05:52:42 -0500

Really! In that one case by case it's all rigth ! belived me..I think so! tanku u so much!

How timely!

kmoldofsky — Tue, 15 Jul 2008 05:11:37 -0500

I've had trouble finding the right school for my boys. They are about to start at a new public school and I know I need to take a thoughtful approach to what and how--or if-- I blog about it.

Kim blogs at Hormone-colored Days, Momformation and Chicago Moms Blog

"To write a blog

Maria0305 — Sun, 13 Jul 2008 15:57:02 -0500

"To write a blog honestly, I think you must either be ignorant of
potential consequences, know and not care, or have the knowledge to
choose what you say wisely and the maturity to deal with the fallout if
someone misinterprets or misrepresents what you've written."

Perfectly put. I'm struggling with the same things on my own blog, knowing that they'll most definitely be used against me in my upcoming divorce and the looming custody battle that should ensue during and afterward.

I feel an obligation to myself, since I am who I blog for first and foremost, to not censor myself too much, but also feel I must be careful and considerate for the delicate situation I am in. I'm quite probably not writing with enough caution, but bleah, I can only put so tight a lid on me. :)

- Maria

http://immoralmatriarch.com

The "consequences"

Cindy La Ferle — Sun, 13 Jul 2008 15:53:40 -0500

This is an extremely important topic, and I'm glad to see it put out there for discussion. As Nordette put it, as much as we value our freedom of expression, there are "consequences for speaking your mind."

Blogging is a relatively new form of communication and expression, and in a broad sense, we're just beginning to see its positive and negative impacts on our personal and professional lives. We're just starting to hear about high-profile bloggers, for example, who've lost jobs thanks to their blog postings. Of course, these isolated cases don't overpower the fact that blogging remains an incredible community builder.

In a way, bloggers wrestle with the same dilemma that every celebrity faces: We value our privacy and cherish our families -- but we also want people to pay close attention to what we're doing. Not an easy tightrope to walk.

As a family newspaper columnist, I was hired to write weekly about my family life in our typical American suburb. My son was in his early grade school years when I started that column, and my husband's career was just taking off. So I had to be very careful of what I wrote -- because even what I considered "innocent" topics were embarrassing or potentially hazardous to my family members. (I never wrote much about my in-laws!) As careful as I was, I still found myself in hot water sometimes. And I wasn't reaching nearly as many people in print as I can potentially reach online.

I keep these lessons in mind whenever I blog. And I am always a bit surprised when I learn about bloggers (and print journalists) who've not considered "the consequences."

Cindy's Home Office: www.laferle.com

To blog or not to blog

cutiebootycakes — Sun, 13 Jul 2008 14:42:53 -0500

I think that your post brings some very important issues to light - specifically how transparent are we when we blog and what are the potential ramifications? I am new to blogging and was very clear with myself about how I am going to blog. Although this is an "online journal" I would not share my personal journal with the world and therefore will not do so in my blog.

But, as is the case with Ms. Sohn, how likely is that to serve as protection? In her case it may very well have been better for her to have written her feelings about her daughter's education however that may have been used against her too.

In a perfect world we would be able to write what we want to write, hear the opinions of others and just go on about our way. But the reality is that in the world we live in we have to always watch what we say.

Renée