Tuesday, May 17, 2011

Showcase: JoeyMom from Life With Joey

This morning we're showcasing JoeyMom whose blog is called Life With Joey. JoeyMom's blog goes all the way back to 2006; there's hundreds of posts for readers new to her to catch up on. She says she's a quiet little corner of blogland, but when I started looking online for community, hers was one of the first I read. She's comforting and real. She shares the hard times and the not-so-hard times, and her blog is an important one.

Best posts:
The Crazy Season (IEP Guide):
You’re Not Alone:
A Day in the Life:
How long have you been blogging?

I had a small, obscure little blog for a long time- before we called them “blogs”, even. That one was about my cat. I have blogging about life with my sons and autism for five years last week. Over the course of that time, Joey has learned to speak, Andy has become a soccer hero, and I have battled fierce turkeys of doom.
What kinds of things do you normally write about?

I write a lot about what resources I have discovered in my journey to support Joey and Andy, and about our experiences with the boys. I like to think about my blog as my sort of cyber-living room (probably a leftover from my days as a MUD wizard), where folks can come relax and understand we’re all together in this. There seems to be so much panic when folks first discover someone they love is autistic, I really wanted to put in my voice to say, “Don’t panic. This is not the end of the world, but you have to get it together and do what is needful!” I wanted to help with understanding what is needful and how to get moving, so that it isn’t so overwhelming.
It has evolved to also include more about the issue of siblings, and considering Andy’s needs and experiences as well as Joey’s. Andy is not autistic. I think more needs to be considered in understanding the needs of kids who have siblings with officially recognized “special” needs. Andy and Joey are very close, which can be often frustrating and irritating for both of them, as well as wonderful and rewarding, in ways that families without special needs simply don’t understand at all.
So in its way, its just another MommyBlog for the special needs set, and particularly the autism set. Hopefully folks can grab a squishy couch, a hot drink and/or a cold bowl of ice cream, and join in a conversation about our friends and family. We can get together and share what we’ve learned and what we think might be helpful for others to consider (even if we don’t all try everything or agree on what is helpful).
Who are some of your favorite bloggers?

I actually am very selective in the blogs I read. I know some bloggers trying to keep track of hundred of blogs at once. I check in on that many, but real reading, very few. I’m actually like that in real life, too- concentrate on the good friends, and just keep the tabs on the others.
I regularly read Whitter on Autism, as her kids are slightly older but have many of the same issues I am seeing here with Joey and Andy. She also talks about her kids with a candor and wit that makes it easier to swallow the medicine. She has shifted to doing a lot of book reviews, but they are worth reading.
Stimey at Stimeyland is probably my favorite blog ever. Her kids are my age, she also has the autism and sibling thing going on, and she loves rodents. That, folks, is my kind of woman. And she appreciates the squishiness of a good couch.
Maternal Instincts and Niksmom bring to life a more poignant acceptance of and rebellion against a life with special needs dominating it. If you need a dose of courage, good vibes, hope, and real strength, I always recommend stopping my there for a good dose.
The Quirk Factor and Mommy Dearest is also good for a dose of the sanity within us in the face of the absolutely crazy. She has guys that are the age of mine, and I like the attitude she communicates: they’re kids. And they’re her kids, so don’t mess with them.
Mother of Shrek is one of my longtime favorites, as her son is now a man. I am always looking forward to Joey’s future, and what it might hold- and not hold. At least there are laws I can use to get him some form of service now. When he is an adult, the fight to be sure Joey is allowed to live his life as independently as possible, with proper employment, is going to be so much harder. The other thing I love about this blog is the attitude: C may be severely affected by autism, but he is a human being all the same. I suppose one thing I can say about all the blogs I read is how very much these folks see the people in their lives as human beings, and not just flitting shadows.
I also read a blog called Educated and Poor, and I recommend it to this community as a glimpse into life of an adult just learning she is ADHD- a person with the courage to take hold of her life and reinvent it as needed. She is just emerging from the life of an adjunct- which I am myself. Oh, and she has an awesome mom and stepdad. And lots and lots of cats… and dogs… and chickens. How cool is it to own cats and chickens?
What do you wish people most knew about you?
I wish they knew what a difficult question this is to answer. It is sometimes difficult to tease out who I am outside of being Joey and Andy’s Mom and Allan’s wife and my mom’s daughter; social identities can become so all-consuming. I have little time for my garden anymore, or my sewing, or my stories. I sometimes wish I could take my guys all to the Ganges View and watch the Ram Lila together, the bright costumes and elephants and visions of a narrative so remote from our day-to-day lives. What would Joey think of silk shops and monkeys and the ever-present smell of ginger? How many friends would Andy make among the crowds of children?
I do get sad sometimes. Life is definitely not what I had planned it to be, nor what I trained myself for it to be. I think I would like others, who may feel their lives and selves set aside and overwhelmed and consumed, that it is OK to be sad sometimes. Whenever they feel sad, I hope they drop by my comfy-couch little blog and take a breath of you’re-not-alone.
But most of all, I would like people to know that I care about them, and about their kids, their siblings, their mothers, fathers, sisters, brothers, nieces, nephews, grandkids, and cousins who are meeting their challenges the best way they can. I may be a quiet little blog in the corner of blogdom, but I keep my eyes open. I might not follow yours as closely as some, but I do think about every single one of the people I come across here. You’re aren’t just not alone; you are not forgotten.
What has surprised you the most since you started blogging?
One thing I’ve noticed is that the people I do know in the special needs community tend to be powerhouse people in their own unique ways. People who care enough to be active and work hard to advocate and fight are all strong, fabulous people. It surprises me how many of them don’t think, know, or understand how powerful, wonderful, and fabulous they are. The attitude of society is that somehow parents are at fault for disabilities in their children, and that those children are somehow less than human. It takes a lot of strength and character to stand up and say, “You’re wrong…” over… and over… and over…
…with grace and eloquence. That is what strength is all about. 

With love, from Joeymom. 

MONDAY, JULY 13, 2009

You're Not Alone

One of the big reasons I blog is to give other folks a glimpse of life with an autistic child, to let them know that it is not something to be afraid of, and that there is someone else out here going through things you may be going through. There is a sense of support and security, a sense of comfort, in knowing you aren't the only one out here doing this, experiencing this, trying to help your child and your family.

I know I tend to keep the negatively neatly tamed here. Yes, we have bad days and weeks and months and they get blogged about, but the run-of-the-mill, every-day roller-coaster ride of having children, and especially special-needs children, I kind of leave out for the most part. It may seem our lives are all fun and roses and smiles. Like that last post about the beach? I left out the major double meltdown when clouds appeared on the horizon and I decided it was time to head home before rain hit. Why? Because personally, I find the fun more notable, and more worth remembering than the screaming that followed. Perhaps it is a leftover of being a mom- you keep the baby and forget the labor pains.

Some of my readers have commented to me what a lovely summer we are having. Yes, we are. And no, we aren't. Its been very much our usual roller-coaster. We are having some issues, some of them minor, some of them not so minor. Name-calling, biting, running, melting, hyperactivity, yes, they are still part of our lives.

So folks, you aren't alone.

If you’ve ever been frustrated with your child’s progress (or lack thereof) to the point of wanting to cry or scream (or actually crying or screaming), you’re not alone.

If you’ve ever been so afraid of a regression that you stayed up half the night trying to think of what to do for your child, you’re not alone.

If you’ve cried in public out of sheer stress of dealing with a melt down, you’re not alone.

If you’ve ever lost it in an IEP meeting, you’re not alone.

If you’ve ever prayed hard for a stiff drink while trying to get your melting-down child to a car that was clear across the parking lot, you’re not alone.

All those days and nights of stress, tears, tearing out your hair, worrying, studying, chasing children, and wishing your life was being spent somewhere else, and thought you were alone? You weren’t. I was right there with you.

I am still right here with you. I just want to put out that reminder that there are ups and downs all over, and the ups are every bit worth those downs. There is a reason God put wine upon this earth, and sometimes I need an extra glass, just like you.

If you're having one of those minutes, hours, days, weeks, summers... here's a hug for you. You aren't alone.

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