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Time for ourselves

April 13, 2011 in Featured, From Julia by Julia Roberts

I am on vacation this week. The result of a generous friend I’ve been given the gift of time at a beach out for 7 days. Every year I take a week long trip with a friend that involves sleeping, reading, walking and writing. This year that friend wasn’t able to go and so I thought my plans were kaput. Happily another friend came up with this little arrangement.

I think I’ve always had the desire to take time for myself whether it was seeing a movie alone or with a friend, scrapbooking, crafting or hanging out with a friend or even vacationing without my family but it’s not always been easy. I think like a river (I use that analogy a lot) our availability to do so becomes narrow and wide. When our kids are sicker, when our kids are struggling, when our life just demands more like paperwork, meetings, applications and appointments we just don’t have the time for ourselves.

It’s those times I want to talk about. It’s the times that we feel alone, when our life is so hectic we barely have time to take a shower. I want to talk about the days we don’t know how we’ll get it all done. How, during those times, do you find time for yourself?

* I take a 30 minute nap. I will turn on the TV and lay down on the couch. I don’t feel guilty about it. Ever.

* At night when the kids are asleep I try to do something I enjoy like reading, writing, crafting.

* I let the housekeeping slide a lot. A lot more than I would have before this life.

* I let my VM work for me and don’t talk on the phone when I need time to myself.

* I let other things go; I don’t commit to things I really don’t want to do because my time is limited.

* I learned how to say no.

I was just wondering what ways you might find time to yourself. Is it lunch alone? The laundry room hiding? I know that I do need time for myself because when I don’t I’m not very pleasant to be around.

So really, that makes taking time for myself is kind of a gift for everyone else, right? Share! Maybe you’ll teach me a new trick for stealing a few minutes…

Welcome to New Members

March 11, 2011 in Around the Site, Featured by Admin Dawn

Gail Curran: Gail works at the Arizona Centers for Comprehensive Education and Life-Skills. Are you in Arizona? Look Gail up!

Achieve Beyond: Achieve Beyond specializes in nationwide pediatric therapy and autism services for children ages 5 and under including states like California, Illinois, New York, Virginia and Conencticut. Achieve Beyond uses a family focused approach in providing early intervention speech therapy, occupational therapy, physical therapy, ABA/autism therapy and psychological counseling. We strive to serve our patients and their families by providing services and evaluations support in their predominant language, at both the home and community settings. We also offer private pay / insurance services, educational workshops for parents and therapists as well as translation / interpretation services at several of our branches.

Denise Moberg: Retired from 30 years as an SLP in the public schools. Currently have a part time private practice.

Kyra: I am a stay at home mother of 4 kids. 2 are Special Needs. My 7 yr old has ADHD, Auditory Processing Disorder, Sensory Modulation Disorder, and Dyspraxia (the last 3 are very new to us). My 2 yr old has Apraxia and Sensory Modulation Disorder. My other 2 kids are just in special need of special attention. I am on a leave of absence from school right now so that I can get a better handle on my family and concentrate more on them than me.

Julie Fick: I am a full time mom to my son who has DiGeorge Syndrome. We live in Woodstock, GA.

Alisa Ricketts: I have been married for almost 20 years and I am a SAHM of two teenagers, one of whom is a special needs child.

Patricia: I have a 7 yr old with odd severe, conduct disorder, ocd tendencies, generalized anxiety disorder, separation anxiety disorder severe

Ayoca Freeman: I have two beautiful daughters; their ages are 8 and l year old. My oldest was blessed with an extra chromosome better known as Trisomy 21, one of the types of Down syndrome.

Jennifer McMahan: Mom to 2 beautiful daughters. The youngest one has Dravet Syndrome. I am actively involved as a volunteer in the IDEA League, the only organization that provides advocacy, support, education and research for Dravet Syndrome. Their website is http://www.Idea-League.org. It is my goal to help raise money for research as well as educate the public on this very rare syndrome.

Amanda L.: Mommylebron is the slightly diabolical leader of Lefam (just don’t tell LeDaddy, he thinks he’s the leader, riiight). She is a snarky & sweet mom on a mission! Once she attains her goal of world domination she will educate all its poeple on pediatric mental illness and erradicate stigma. All while wearing a really cute apron. This domestic diva, kitchen queen, laundress extraordinaire also enjoys writing, reading, movies, scrap booking, word puzzles, kiddie cuddles, wet kisses, big brown eyes……Oh, and, during her “on time” she molds the only-slightly-less-diabolical-minds of 4 year old’s (aka preschool teacher).

Stephanie LeMieux: I have a boy with HFA and Tourette’s

What’s happening around the community

March 4, 2011 in Around the Site, Featured by Admin Dawn

Remember tomorrow is our first ever In Real Life event but it won’t be our last! Our goal is to give you opportunities to build your support network on AND off-site. We are working on more events for laster this year so stay tuned!

March & April Book Club Book

We’re very proud to announce that we’ve chosen site member Suzanne Kamata‘s anthology Love You to Pieces: Creative Writers on Raising a Child with Special Needs.

The first collection of literary writing on raising a child with special needs, Love You to Pieces features caregivers’ perspectives at every stage in the lives of children with mental or physical difficulties, from premature birth to middle age. In this rich blend of short stories, essays, and poems, families cope with autism, deafness, muscular dystrophy, Down syndrome, other forms of retardation, and more, laying bare the moments of rage, disappointment, and guilt that can color their relationships. Parent-child communication can be a challenge at the best of times,b ut here we see the epic struggles and triumphs of those who speak their own language – or don’t speak at all – and those who love them dearly. Together, the authors paint a beautiful, wrenchingly honest portrait of what it means to care for a child who does not experience the world as we do.

We hope you will join us!

Welcome to our New Members

Aubrey L.: “I have a support group for others affected by premature birth (I was born three months premature) called www.precious-miracles.org as well as special needs (I work as a Care Aide within a school district). I want my website to be a place of support, encouraging words, a listening ear, a shoulder to lean on. Please visit my site to find out all the interesting offerings it has!”

Danielle: “I work in special education and am the proud mother of a child with special needs!”

Heather: “My daughter is 5 1/2 years old, and was diagnosed with CP around 10 months. It has been a long road and just intersted in meeting others with simillar life stories.”

Beth: “I am the very happy mom and 2 boys! Matthew is two and perfectly happy, healthy! Grant is going to be 1 in March and he is perfectly happy and for the most part healthy besides his CP he has! He is doing great and accomplishing so much! These boys bring so much joy to my life!”

Pat Boyle England: “Advocating for kids” and who blogs at septanorthbellmore.blogspot.com

Chaney who blogs at Here’s My Voice

Ann Rounseville: “I am currently a stay at home mom of an adorable 3.5 year old little boy who is diagnosed with PDD-NOS, Global Developmental Delay and Hypotonia. He is non-verbal but has the best belly laugh in the world! I am also expecting a baby in May. Life with our little guy has not been easy and I find meeting other parents of kids with special needs to be so very helpful and important!”

Jaymi Griesmeyer: “I am the mother of three amazing children. My oldest is 7, he is gifted and has generalized anxiety disorder. My second son is 6 and was born with a congenital heart defect and had open heart surgery when he was 5 days old. My youngest is a 3 year old girl who has epilepsy and developmental delays.”

Ginger Adams

Tisha Libbey: “i have a 5 yr old daughter with CP. she is legally blind, has a VP shunt and a G tube for all meals”

Kristy Allen: “Mom of son with developmental delay.”

Jenny: “I have mild Autism. I may even be Aspergers but I dunno. I have a little brother with sever Autism. I’m also a Christian. I’m a greatful believer and follower of Jesus Christ.” Jenny blogs at The World of Mismatched Socks

Deanne Webber: “I am the mom of 2 incredible children”

Have you added your blog yet?

There are lots of ways to help us discover your blog or website:

• You can add your blog feed to our site. Every time you update, we will pull in an excerpt and post it to our Blogging Our Lives Group. It will also show up in our activity feed that updates here and on our front page.

• You can add your blog address to your signature file on your profile.

• Next time you write a great blog post let us all know about it by sharing it as Community News. It will update to the Community News page and go out on our Twitter stream.

 

We live this life to experience it

October 28, 2010 in Faith by Janet Callahan

This essay is part of our ongoing Faith series where we ask spiritual leaders and parents to answer the questions: “Do you think God gives some children special needs? Do you think he chooses some parents to have special needs kids?” from their unique spiritual perspective. It is our hope that posting answers will encourage discussion but also comfort families who find an answer that resonates with them. Do you want to contribute? Contact Dawn.

Common wisdom holds that if you ask ten Wiccans a question about Wicca, you’ll get twelve answers. We’re a notoriously hard to pin down group. We don’t have a holy book that informs our practice – we have a tradition of passing information from one to another, and comparing notes about our own experiences when it comes to new traditions and practices. So, with that in mind, what I’m about to say is mostly my belief, and may or may not be shared by other Wiccans.

Wicca is a religion that sees the divine as immanent – the divine is a part of each of us, in each rock, each tree, each blade of grass, each insect, and we and the world around us are a part of the divine. The cycles we see around us – the seasons, the moon phases, day and night – lead us to believe that life, too, is a cycle, of birth, life, death, and rebirth. We live this life to experience it – to learn, to teach, to feel, to love…to experience birth and death, and everything in between, and then to come back and try it all again. Much of the broader Pagan community (though certainly not all) holds similar beliefs.

I’ve had to put a lot of thought into how I, as a Wiccan, view the situation I find myself in from a spiritual perspective, with a toddler who was once a micropreemie, smaller than a soda bottle, with lingering lung issues, a tracheostomy and its resulting severe speech delays, and some motor skill issues. And, by extension, how the Wiccan faith, and the broader Pagan community, view disabilities. After all, I am a part of this community of faith, as is my husband and my child, and that means we have to come to grips with where we fit in, tubes and all.

Beyond all the reincarnation and immanent divinity, I believe that the world is not deterministic – that we have free will, as does every other living thing. Things happen that are random – luck, chance, being in the right or wrong place at the right or wrong time. I also believe that the world, and all in it, while not perfect, are whole. All the variations are just that – variations – neither good nor bad in the big picture. After all, wouldn’t the world be a boring place if we were all alike and all perfect?

But, no matter how things turn out, we are all still children of the God and Goddess – they are still part of us, and we are part of them. And every day, we experience this life, this material world, and if we’re paying attention, we realize how magical and wonderful it really is.

Being a special needs parent has taught me (remember? we’re here to learn!) that I really wasn’t looking at things from that perspective, that I didn’t stop to smell the roses, or watch the sunset, and that I didn’t know what the word miracle meant. I am thankful every day for my son’s existence – for his life, for his improving health, for being able to watch him learn to open his eyes when he was tiny, for all the little things. But mostly, I’m humbled – I’m stronger than I ever thought possible, but my son is even stronger than I am.


Janet is, first and foremost, mom to “Acorn,” a former 27-weeker micropreemie, who at 2 is still sporting a tracheostomy, oxygen, g-tube, and a list of diagnoses a mile long, although many are now hard to see in his behavior and development. In her spare time, Janet works full time as an engineer, and still manages to find time to do some art and some writing. She’s been a seeker for most of the last 15 years, and currently maintains a Wiccan-based practice with her husband and son.

Meet Christina: Founder of Hopeful Parents

September 20, 2010 in Around the Web, Resources by Admin Dawn

When we first started this site we looked around at the landscape of special needs support sites and we were excited to find Hopeful Parents early in our search. We love what Hopeful Parents does and feel like their mission complements ours so we wanted to celebrate them by making them this month’s featured organization. We’re starting off with an interview with Christina Shaver, very humble founder of Hopeful Parents!

How were you inspired to start the site?

In 2008 my four-year old was admitted to the psych unit for the first time. I was scared and had all these images (thanks to the movies) of what the inside of a psych unit looked like. I wanted to find someone, anyone else whose child had been admitted so young…and I couldn’t.

A few months later, as my son’s psychiatric condition deteriorated, I felt very alone and isolated. There were other families I knew whose children had ADHD like my son and had an autism spectrum diagnosis like my son and had anxiety like my son — but no one who had all three and no one who had the additional and very severe diagnosis of psychosis.

At the time, I hadn’t found “my tribe” of parents with young children who suffer from psychotic episodes (it’s so rare). What I did find is my journey paralleled those of that other parents of children with different disabilities. So many of us experience grief and isolation; we feel overwhelmed; and on some level, we may sometimes even laugh at our situation (because sometimes it’s easier to do that than cry). Regardless of someone’s perspective, though, I think we all seek hope for our children and families wherever we can and in whatever small or significant ways it turned up.

But to 2008 — I was in counseling. The thing about having a child with a psychiatric condition is that one of the more immediate questions the specialists ask is what kind of support we’re getting as parents. I don’t know that this happens for a child with other disabilities — and being in counseling now for four years has been has helped me beyond measure.

One of the themes that arises in counseling is self-care. I think so often we as parents lose ourselves as we parent. We sacrifice ourselves on behalf of our children. The problem is that when you’re raising a child with special needs, as a parent, you have to be completely and totally engaged and available. There are so many decisions to be made, appointments to keep, care to give. If we, ourselves, feel lost or overwhelmed or depressed or anxious, it confounds our ability to provide for our fragile children.

And so, after all that — feeling isolated, yearning for connection, and a desire to help other parents remember to care for themselves — I started Hopeful Parents.

How did your vision change as you went?

Believe it or not, my vision has been pretty steadfast — to help parents of special needs children remember to care for themselves and support each other.

I’ve always had this very grand idea of finding every parent of a child with special needs, so that together, with one enormous voice, we can advocate for ourselves and for our children.

As a group, we struggle with anxiety and depression, with finances, with health insurance, with awareness and sensitivity. Society doesn’t take us into account much — and, at this time, why should it? We are the minority. The only way any minority has ever changed society is by coming together with one voice and advocating for themselves. I have this bold vision that someday, we Hopeful Parents are able to do just that.

How did you choose the first contributors?

Choosing the first contributors for the site was the hardest process. It took me about a month to compile a list of parents who have children with special needs. Maybe I wasn’t good at Google searches back then, but I kept coming up pretty empty on my searches. I did find a few that way, though.

In addition to those I found through Google, the first contributors I asked were people I knew “in real life” and through blogs. But I think there were only 10 or so. I asked them who they knew, and found a few more contributors that way. By the time the site was ready to go up, we had 30 writers!

Now, we get writer requests all the time. I wish we had the space to accept every one. Honestly, we do accept nearly every writer request at some point when space becomes available.

In fact, in August, we expanded the writing pool to two posts per day (instead of one). Prior to August, I had this growing waiting list of writers that was stagnating. If that list grows in that way again, we will consider increasing the posts to three a day.

I’ve made a conscious choice to include anyone who wants a voice here, regardless of their writing capability. This isn’t a literary site or a news site or an information site. Hopeful Parents is a place for parents to express their raw emotion — and very often, raw emotion is scattered and messy.

What are your long term goals for the site?

I don’t think of Hopeful Parents as a site, really. I think of it as a community. And truthfully, I don’t feel it’s my place to determine what we do long term. I may have helped us find each other, but the community should really set the goals.

In fact, this spring our board of directors incorporated Hopeful Parents as a non-profit organization. So major changes within Hopeful Parents are now no longer at my sole discretion.

That said, there are some activities that our board of directors and board committees are looking to establish including getting our community offline and in person. We’ve launching a membership campaign that will not only drive resources into Hopeful Parents so that we can continue our search of every parent of a child with special needs, but will also allow us the ability to meet each other.

We’d like to reach a critical mass so that we can start groups of Hopeful Parents around the country. These groups could meet for coffee and in an informal way to start, gain support from each other.

The board has also discussed the idea of doing some kind of retreat, which would give all of us a good reason to find a few days respite from our role as caregivers and be with others who understand life’s intensities.

Further down the road, our community has enormous interest in advocating for ourselves and our children and in creating awareness and sensitivity around special needs. Again, though, we will need far greater numbers than what we have today.

We’re only gaining momentum, though, and I do see all of these activities materializing in the future.

Can you share one of your success stories of the site? One of the times your vision was truly realized?
Success stories happen all the time at Hopeful Parents. What we consider success doesn’t happen at an organizational level, but happens at a very deep, introspective personal level.

The stuff of life is made by all the little things, and all those little things are happening all the time within our community.

Success for Hopeful Parents means making individual connections with others to whom we can relate and it happens all the time in the blog posts, comments and community forum.

So often, people tell me that they can’t believe they only just found Hopeful Parents and wished it had been there for them all along — to me, this is the true testament of our success: that we have become a foothold for someone on their journey.

What do you look for in a contributor?

I would say our guideline is that there is no guideline. We honor everyone’s individual journeys. As long as someone is willing and able to post on their assigned day, they are welcome.

While we will always welcome new writers, the focus of Hopeful Parents is finding every parent of a child with special needs. Parents can find out more about membership at http://hopefulparents.org/membership.

Call For Submissions for Special Needs Literary Magazine

September 16, 2010 in Special Needs News by Admin Dawn

Pentimento is a quarterly publication written for and by individuals with disabilities and their caregivers. The word Pentimento refers to an underlying image in a painting, as an earlier painting or original draft that usually shows through when the top layer of paint becomes transparent with age. Therefore, the word itself implies seeing beyond the surface. That is the mission of this magazine: To challenge its readers to see beyond disabilities thus experiencing the way in which we are all connected.

What makes Pentimento the first of its kind is that it is a magazine for and by the disabled population that is purely literary in nature. Each issue will be filled with well-written personal narratives that avoid medical jargon, research, or advice.

Creative non-fiction essay submissions should be polished with strong imagery, affect, and good narrative arc. Creative non-fiction essays receive payment upon publication as does accepted art work for the cover. Poetry is also desired.

In addition, we are seeking unpaid submissions to The Reader’s Pen and “Uncut.” The Reader’s Pen topic is “Taking a Chance” due by November 1st for the January 2011 issue. “Hope” is the next Reader’s Pen Topic due by February 1st for the April 2011 issue.

To learn more about Pentimento Magazine and see detailed guidelines on the submission process, please visit www.pentimentomagazine.org

Hat Tip to: Literary Mama : Blog : Call For Submissions: Pentimento Magazine.

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