It Doesn't Go Away - (Special Needs Mom Post) - January 29, 2011

I want to believe the best of people. When someone first gets the diagnosis for his/her special needs kid, whether it's at birth or later (like...me!), most people probably at least try to be supportive, right? I mean, there's always SOMEONE being jerky or unhelpful, but I think for the most part people are good and are there for you or bring you food or listen to you cry and vent and cheer. The jerky ones fall away quickly (or should!).

But the thing is, a week, a month, a year, ten years after that moment, the diagnosis doesn't go away. And yet, I'm thinking sometimes people think that the parent should have moved on and stopped talking about it and started...getting over it.

Or maybe it's just me. It's probably just me. Let's talk about me, shall we?

My kid will always have cerebral palsy. Even when she walks unassisted and talks (because she will!), she'll have it. It will be a part of her life and of my life forever. I will always have stories about it. Hearing someone laugh about "will this [innocuous thing] cause brain damage to my fetus? tee hee!" will always strike a nerve. Listening to someone talk about their child's milestones when their child is years younger than mine and doing things mine cannot do will always sting (at least until she catches up, because catch up she will). For now, still early in our journey, things are fresh. It's been about two years since we started getting some answers - so little time and so very much. Maybe I'll feel differently in ten years or 20. But this is my current reality and there's no escaping it. Maybe someday it won't be as big of a deal in my or her day-to-day life, but it will always be there.

I can't stop talking about Being the Mom of a Special Needs Child because it is who I am now and who I always will be. I can't get over it or get past it or move on. I can cheer on my kid and her amazing accomplishments day by day, moment by moment. I can support her and love her and give her strength. But this isn't a topic of conversation that's going away and it's not a set of emotions that I'm going to ever move on from, even if they fade or I learn to deal with them. It's not finite.

Please. Be kind to your friends with special needs children. Watch your language. Listen to their stories. Evaluate how they might react to your own worries, hopes, or fears.  Don't hide things, just be gentle when gentleness is needed. But above all - please please please NEVER ASSUME ANYTHING. Just because I say X doesn't mean anything to anyone but me. Everyone is different. I can only speak for myself - but I know that assumptions almost always are hurtful.

Want to read a great book? Check out My Baby Rides the Short Bus - an incredible collection of essays by parents of children with a wide range of special needs and conditions.

General disclaimer: Posts like this are all about me and my perceptions of my world and are not intended to be used as a universal guide. I change my mind and my situation changes on a constant and steady basis. I reserve the right to change my mind, to write in the future that I feel differently, or to disagree with you while we find some common ground. I'm learning to be more open and this is a step.

Friday Five - January 28, 2011

First, I wanted to let you all know that one of the three Solofill winners did not get in touch in time, so I have chosen a new winner. Congratulations Violet!

This is last week's five from Friday5.org. It is entirely possible I will want to do this week's as well, when they're up, but I liked these so I'm doing them. I make my own rules, I'm a rebel, yeahhhhhh.

1. There are superheroes named Superman, Superfly, and Supergirl. Based on your performance this past week in whatever you do, what would have been your Super_____ name?

Super Mama. Without a doubt. Maybe also Super No-Need-for-Sleep-Woman

2. This week, what has been superterrific and what has been superlame?

Superterrific - I'm now on a local mom advisory board of sorts for a new local news website. As I find out more, I'll post about it. It's not for mom issues as much as what's going on around town, and I think it will be fun. Also, my kid is making incredible progress. And we started Reiki therapy with her and I think it's going to help.

Superlame - Baby no naps. Baby no sleeps. Me being exhausted and not getting things done that I wanted to do. 

3. Which of Superman’s abilities would have been the most useful this week?

Mind reading and flying. But I always want those abilities.

4. What do you most expect will be super this weekend?

I'm taking a short class in giving massages to your kid, and that should be fun. No other big plans, so not much else that's super, I suppose. 

5. What are your thoughts this week about the coming Super Bowl?

I have no idea who is playing (I root in a vague way for the Patriots and I sort of am aware of the Falcons and I know neither team is in this year). Instead, I will tell you that I am very excited for the Puppy Bowl, as always. Especially for Kitten Half Time.

Housekeeping - January 26, 2011

Not actual housekeeping, mind you. I'm terrible at that. I hate when I do online surveys and they say "choose your occupation" and then "homemaker" is a choice and I think, well, I don't really do that...and I'm a freelancer, so unemployed is wrong, but self-employed isn't entirely correct either and...I'm sorry, where was I?

I feel like I should update. That's the burden of having a blog, I guess. I need to update so I keep people reading. I got a lot of great traffic and some lovely replies to my post about what not to say to me - me as the parent of a special needs kid, but me, when it comes down to it. I've been working on things like that for a long time and I may start releasing them over time. Releasing is a good word for it because I've always hoarded my writing - something that does nobody any good.

A note - just because you follow my blog, you happen to have a blog, and maybe you found me from some sort of "get to know you" type thing, does not mean I am going to follow you back. I read blogs I like. I don't care if the blog writer follows me or even knows of my existence. I hope that if someone is following me in some manner, it's because s/he wants to read my blather. (By the way, I use Livejournal's feed reader, so there's not an actual record of my "follow" anyway, but my blogroll is a great way to see the types of things I like.)

I haven't been reading as much as I want to, book-wise. I need to rectify that and quickly. If any e-reader company wants to show me how awesome its e-reader is (and maybe send me two, so I can keep one and give away one) then go right ahead. At the moment I can't imagine needing nor wanting one (all my friends and relatives have and love various types) but hey, I'm game. HINT HINT HINT.

If you thought my blog was always going to be deep, profound, or important, then I apologize!

Winners of the Solofill Reusable Filter for the Keurig Brewer - January 22, 2011

My first contest was, I believe, a success! I received 62 entries to win a Solofill reusable/refillable filter for the Keurig single-serve coffee brewer system. I used random.org to pick the winners and they are...

Steve (samoregon930)

Bernice (shortstuff431)

Nancy (postalonen)

I've notified you all via email.

Thank you to everyone who entered! The Solofill is available directly from the company or through Amazon.com and I really recommend it to anyone who has a Keurig. I used mine just yesterday with some Dunkin Donuts pumpkin spice coffee, and the cup it made was delicious!

I hope to be able to do more giveaways and contests in the future. If you're a company interested in working with me, please get in touch. Thanks again!

Five Things You Probably Shouldn't Say to the Parent of a Kid with Special Needs - January 18, 2011

Five Things You Probably Shouldn't Say to the Parent of a Kid with Special Needs

(or, well, five things I'd rather you not say to me)
(and hey, don't all kids have special needs somehow? because they're KIDS and stuff?)
(there was this camp in my town that was for "exceptional children" and I was always like "hey, I'm exceptional too! I want to go!" and as I grew up I thought, that's an odd euphemism)
(I digress)

1. How did it happen?
In our case, I actually don't know. But does it matter? It happened, and if I'm not volunteering the information, then I don't want to get into it. On the other hand, if I like you, I'll probably tell you the story and then you'll know. But the implication that something OMG HAPPENED irks me - particularly when the impression I get is that you're asking so you can somehow prevent it from happening to your kid and/or feel better that it didn't. At the very least, don't let this be the first thing you ask me.
2. I couldn't do what you do/How do you do it?
I don't know. I just do. This is my kid. How do you deal with a kid who runs away from you in a parking lot? A kid who talks back to you? A kid who suddenly won't stop saying your favorite curse word? You just do, but I have no idea how you do it. If you're a parent, you do what you have to do, no matter what your kid is like. You have good days and bad days and days when you want to hop a plane to a warm place with foofy drinks that doesn't allow children.
3. Is she walking/talking/reading/potty trained/whatevering yet?
If I haven't volunteered this information, please don't ask. It just feels like a stressful or loaded question, particularly if it comes right after I tell you some of the amazing things she now can do. She'll do things in her own time, and I'll be yelling from mountaintops when she does them.
4. Is she mentally challenged?
Yes, someone really asked me this. Yes, I was incredibly offended and found it incredibly rude. It's none of your damn business and WHY DOES IT MATTER TO YOU? Again, in our case, it's not true and in fact my kid is super-duper smart (says her proud mama), but what if she was a bit behind or had some learning disabilities? I'll have either said so or will have left it unsaid. (And sometimes I do make sure to say up front that she's smart and understands just what you're saying because it's important to me that you know this, but that's me and my baggage and my issues.)
5. *silence*
Look, it's OK. Really. If I've brought it up when she's not with me, it's because I'm stating a fact. If I've brought it up when she's with me, it's just to explain why I'm carrying her or why she's using her walker or why she's screaming at you when all you did was say hello. Don't walk away from me, don't stop talking to me, and don't be afraid to ask honest, real questions. I'll answer them, even if the top four things seem like I won't. I'd rather have you ask then not ask. But it breaks my heart into a million pieces when you just walk away. Say "I'm not sure what to say" if that's all you have - I can work with that.

Oh and a bonus item - don't assume you know what her diagnosis is. I've given up on trying to figure out why kid X has a wheelchair and kid Y is nonverbal. It could be a million different things and it is not necessarily the hot diagnosis of the decade, OK?

Wee disclaimer: This is really not a universal type of list, it's all about me me me and some specific incidents that happened. We're all different, I just wanted to get some things off my chest. Thanks!

Meet Me on Monday - January 17, 2011

This is a cute idea - Meet Me on Monday, a meme to let bloggers get to know one another (from Never Growing Old).


Questions: 
1.  Do you like your ice cream in a dish, waffle cone, pretzel cone, sugar cone or cake cone?
If I'm out, I get it in a sugar cone. If I'm home (and I'm trying to avoid having ice cream in the house these days as I try to lose a bit of weight), I just plop it in a dish.

2.  Do you read the newspaper daily?
I read the AJC and the Boston Globe online almost every day (well, I skim the headlines). I buy the actual physical Sunday paper every week; I read some of it and then fish out the coupons.

3.  Marinara or meat sauce?
I'm a vegetarian, so it's marinara all the way.

4.  Last time you cried?
Today, when my daughter did some amazing stuff at physical therapy. (It was happy tears though.)

5.  What word/phrase do you find really annoying?
I find so many things annoying...so I'll toss out "I could care less." (It should be "I could not care less.")

Let's Talk about Freebies - January 16, 2011

Don't forget that my contest to win a Solofill reusable filter for your Keurig brewer is still going - it ends Friday!

I've been able to score a bunch of freebies at stores, I've won a contest, and I cashed in some MyPoints, so I wanted to make a note of it. My goal with this blog is not to give you the heads up on deals - there are plenty that cover that (including many in my blogroll!) - but to talk about the deals I got, both to keep track for myself (selfish! ha!) and to inspire you. I don't have a ton of extra time (right now I'm writing this blog post while my daughter works with her speech therapist) nor a lot of patience - I'll never be on Extreme Couponing nor will I ever have an entire floor of my house devoted to a stockpile - but I do love to get a deal!

• Best deals first - I won a Melitta One: Single Cup Coffee Pod Brewer and a box of pods from American Coffee Services!  So fun! They have great prices on single-serve coffee pods/K-cups/T-discs, etc., so check them out!
• I saved up enough points from MyPoints.com to earn a $50 Amazon gift card. (If you'd like a referral to the site, which would give me some bonus points, leave your email address in a comment on this post. However, you can also join without a referral, so go for it!)
• I won another few $5 Amazon gift cards from Swagbucks. I really like the new Food videos on the site, actually, and watching them has boosted my bucks a ton.
• I scored two bags of Hartz Crunch N'Clean cat treats at Target for free. They were on sale (or...is this the everyday price?) for $1.49 and I had two coupons for $1.50 off. I learned about this deal from CouponMom.com by the way - that's one of my favorite sites for the quick-and-dirty best deals. I also got two giant canisters of oatmeal for 4 cents each (plus I got 5 cents back for using my own bag so...6 cents for 96 ounces of oatmeal - and I love oatmeal!)
• I scored an adorable tree-shaped tent for my daughter's bedroom for $20 - $10 off of the regular price - because I found it hidden on a clearance rack on the perimeter of the Target store.
• I got a free bottle of Sierra Mist Naturals soda from Target because the last time I was there a coupon printed out for a free bottle with no extra purchase required. A nice treat, and I like that this soda uses sugar and not HFCS or artificial junk.
• I got four bags of Friskies cat treats for free from Kroger with a coupon that came out in November and that expires today. The treats are on sale for $1 per bag (a great deal already) and the coupon was $2/2.

However, I also bought the double paper today (the early and late editions bundled together for $3 instead of $4) and one was missing some coupons. (I emailed the paper; last time this happened, they mailed me the coupons. It's annoying though.) And the bedding we bought my daughter at Target last night is on sale today (of course) (but I may go back and get my refund if I have time). And I dropped off empty ink cartridges at Staples last week and then I found out that Office Depot is giving $5 per cartridge instead of the $3 I'll get from Staples. Ah well. I can't win them all! (I did get a box of 18 K-cups at Office Depot for $6 by using a 40% off coupon - yay!)

Why I Haven't Updated - January 13, 2011

Because I live in Georgia and the snow and ice have stopped time, more or less. I haven't gotten mail delivery since Saturday, I left the house for the first time yesterday (to go about a mile away for lunch) and I'm stuck with a special-needs child who is frustrated that she can't go to the swings (she keeps bringing me the pictures of swings and the playground).

The contest is going swimmingly though - please continue to enter and tweet about it and win yourself one of three Solofill reusable/refillable filters for your Keurig brewer. (I love my Solofill!)

Hopefully soon I'll have a book review (though right now I'm reading a rather trashy book that probably doesn't deserve a whole blog post) or something interesting to tell you about.

In the meantime, I've added some new referral links to the right side of the blog (like Shop At Home, which gives you cash back when you buy stuff online) and some new blogs to the blogroll on the left. You also could sign up for Shop It To Me through my blog so that you get really nifty emails about sale clothing in sizes you actually would buy (and that's an referral link too, yes). I like saying blog. BLOGGGGGGGG.

I'm sorry. The snow and ice have destroyed my brain cells. Check a blog from the blogroll (BLOG!) if you want something meatier than this vegetarian can provide right now.

Win a Solofill Reusable Single-Serve Coffee Filter for Keurig Brewers!

PLEASE help me win $500 by clicking here and learning about Purex Complete Crystals. All you have to do is click, you don't have to do anything else. THANK YOU! 


The contest is now over and winners have been notified. Thanks everyone!

My post reviewing the Solofill refillable, reusable K-cup for Keurig brewers has gotten my little blog more hits than anything else I've ever written about. I still absolutely adore my Solofill, so I asked the company if I could host a giveaway, and they sent me three Solofills to share with my readers! THREE! So three people will win one Solofill each - fabulous.

As a bonus, all three winners will receive a coffee-themed 1" pinback button made by me, just like the ones I sell in my Etsy store. (If you don't want it, feel free to share it with a friend. But they're super cute!) (FYI, I also sell magnets, pocket mirrors, bottle openers, and jewelry in my Etsy store, in case you were wondering.)

Win one of three Solofill reusable filters for your Keurig brewer!

So, would you like to win a Solofill from me? Just leave me a comment with your name and email address. Tadah! Done!

BUT BONUS ENTRIES CAN BE HAD!
(Make a separate comment for each bonus entry.)

1. Tweet about this contest using the text I've provided below, then come back and tell me you did it AND link to your tweet. You can do this for two extra entries by tweeting once on two different days.

I just entered to win a #Solofill reusable filter for my #Keurig! Enter by 1/21/11 for your chance to win. http://bit.ly/hYZDbP

2. Blog about this contest and come back and tell me you did it and link to your blog post. You can do this once.

This contest ends in two weeks, on January 21, 2011. I'll pick winners randomly (using random.org). Please note that I have my blog set to hold all comments until I manually approve them, but I WILL approve your comment as quickly as possible. This contest is open to U.S. residents only.

A personal note: Look, I know and you know that a lot of you (if you even read this far) are going to enter the contest, then take off and never come back to my blog. That's fine, I've done that too, and it won't affect your chances of winning. But if you have a minute, take a look around at my other posts. You might like me! I write about books and parenting and randomness and lists and coupons and...stuff! You won't get an extra entry for following me (via Networked Blogs, Google Connect, and so on), but I'd love to have you as a reader.

I bought my own Solofill and my original review was based on usage of the one I purchased. The three products being given away in this contest were sent to me by the Solofill company. I received one additional Solofill to keep.

Book Review (but not entirely): Road Map to Holland by Jennifer Graf Groneberg

I am always, always looking for books that I, as the mom of a girl with what I lovingly call "issues," can connect with. Books about moms like me, moms who were surprised by a diagnosis or just tripped up by a change in life's plans. Books that are not overly religious or encouraging me to simply make the best of it. Books that acknowledge that sometimes life sucks and sometimes things aren't sunshiney and that you just can't always look on the bright side. Two that I had found up to this point were My Baby Rides the Short Bus (essays about having a child with special needs written by moms that I could identify with very strongly - I LOVE this book) and Schuyler's Monster (the story of a girl who cannot speak written by a father who tells it like it is, both good and bad). In both of these books, the child or children being discussed were not the same as my kid, but the emotions were often the same as mine, and the parents had similar world views to mine (at least sometimes). And I felt that once again in Road Map to Holland.

I found my copy of Road Map to Holland at a discount bookstore and picked it up with little to go on other than a vague recollection of seeing something about it somewhere. Sure enough, it's referenced in the back of My Baby Rides the Short Bus, and that reference even notes that the title may be offputting. Why, you may ask, would someone not be into that title? Because while the Welcome to Holland story is lovely, it's sometimes overused or turned into a one-size-fits-all tale for anyone with a child with special needs. I have my own take on this story, and maybe I'll share it in a future blog post. But it resonates with many people, and it helped Jennifer Groneberg, and I respect that.

This is the memoir of a mom who is thrown for a loop a few times in the early days of her childrens' lives. She needs an unplanned emergency C section for her twins. As a result, they're preemies who have to spend time in the NICU. And then she learns that one of them has Down syndrome. And she has to navigate all of this while also taking care of her older son, her husband, and herself. The emotions were raw and real. The talk of the alphabet soup of acronyms was spot on. The discussion of the avalanche of information available, overwhelming and helpful at the same time, was perfect. The struggles with what ifs and whys and futures...yes. And so while my daughter was not a preemie nor does she have Down syndrome, I still could identify with this book as the mom of a girl who caught me entirely off guard. It's a beautiful book, full of love, but it doesn't mince words and it's incredibly honest. It's going in my pile, with the other two books I mentioned above, to look at when I need a boost. "Hope is the note of all our songs," Groneberg writes, and I want to write that over and over and over. (I also found that Groneberg hasn't updated her blog in about a year and a half - I hope she comes back to it, because I really want to know what happened since she last updated!)

And because I know how Google spiders work, and because I'm always looking to connect with other parents who are like me, and because maybe you found this post via some helpful keywords, I'll give a bit of background on my own kid just in case. (And maybe someday I'll do a bigger post about all of this.) All things considered, my pregnancy was relatively uneventful. She was born just past full term. I had a wonderful natural birth. We left the hospital early. I began nursing her within an hour of her birth, and we never had any major issues (and still don't). We had no inkling anything was amiss until she was six months old (first-time parents and all that), and we didn't receive a diagnosis until she was about 13 months old. She has mild cerebral palsy, but we still don't know why. She's hypotonic rather than hypertonic (with some mixed tone). Her prognosis is bright, with doctors and specialists telling us she will walk and talk, sooner rather than later. She races around with a walker right now and has a few words and signs - and some definite opinions about her world. And we're still figuring her out, day by day. And I'm an indie funky crunchy mom who never stopped being any of those things. I don't fit into most support group settings - I'm too loud or too crunchy or too out-there or my kid isn't disabled "enough" or doesn't have the "right" kind of disability for the group. But that's OK - I'll find my own support team the way my kid has found hers. 

So there you have it. Book one of 2011 - I'm hoping to read 100. I tried to make Great House by Nicole Krauss my second book of the year, but I just couldn't get through it - too dense, too twistyturny, and not where my head is at right now. I told you I rarely read fiction, though, and I can respect that this book IS beautifully written. But I won't finish it, alas. I think book two is going to be something light and ridiculous - watch for a review. Maybe.