Hopeful Parent-ku

I'm over at Hopeful Parents today with the following entry.  Be sure to click your way over to their site and sit down a spell!

Alright, let's get real here for a minute.  I have admittedly been a wee bit lax on regular blogging, which in turn means a laxness here at Hopeful Parents.  As I've said in my own blog, it's not that I don't have things to say, it's just that I realized that my state of mind recently is such that all my blog posts end up sounding whiny and bitchy.  I'm not a smoke and mirrors, everything-is-just peachy-when-really-it's-not kind of girl--quite the opposite--but it still doesn't feel right to me to look back on my reflections and to only read negativity.  I very briefly tried to hold myself to a weekly entry called 'thankful Sundays.'  My family does not attend church, so reflecting on what I was thankful for on a day traditionally held for church-going, I thought  was good practice.  Yep...didn't last very long.  The gripes took over way too often and made me feel false in my attempts to try and come up with something cheery.  (yes, this is all probably good information for a therapist or the zen teacher I probably need to start seeing)

So with that, I decided that today I wasn't going to bitch and whine.  No, sir, we're going to have a little fun here today, and I do hope that you'll join me!

Back when I lived on the mother ship, (that's the great state of Texas for those of you who don't know), I was a member of a lovely virtual community of mothers.  One such mother has her own fabulous blog called 'Haiku of the Day,' which I highly recommend you read.  Kari's pretty damned funny, and her haikus are, too, even though life is certainly not always a bowl of cherries for her either.  It's quite therapeutic to come up with your own haiku when things are seeming a bit shitty in your life, so I think today is a perfect time to come up with a few of my own.  They don't always have to be funny, and they don't always have to be sad; they're quick expressions of your feelings or current situation.  I find that leaving them as they are on my first take is best.  I honestly don't ever remember revising a haiku upon second reading as you might with other poetry styles.  Here's my quick take on a few haikus for today.  Share some of yours in the comments section!

Shower, elusive

My hair's still in a clip

Oh, wait, that's the dog!

Diapers at seven

Not quite what I imagined

No pee on the floor!

Little brother big

While bigger brother little

Confuses me some

 Parenting is hard

Nobody warned me of this

Where's my manual?

Is There A Doctor In The House?

I posted the following at Hopeful Parents. Be sure to stop by their site for the Pampered Chef giveaway!

M has pink eye. How we had managed to go for over seven years unscathed by this lovely bacteria, I am not sure. Actually, I think we might be fairly average in this regard, (I've never had it in my 37), but my pediatrician's shock over it made me wonder if it was that unusual to have not experienced such joy as of yet. His chuckle-y reaction got me thinking about how we are perceived by the doctors we visit who aren't traditionally the ones who see kids on the spectrum or with other special needs very often. Do they assume that with all the other craziness we seem to embody that our kids are likely to get every ailment under the sun compounded with their unfortunate tempting of the odds to have their chosen disability in the first place?

We live in a smallish town that requires one to drive over a small mountain (or a large hill--whichever optimistic/pessimistic approach you'd like to apply to this road that winds up and then down) if you want to go to any of the big box stores. And if you want to go to really good doctors...well, the word on the streets is that you should drive over the hill for that, too.

We do drive over the hill for most of our doctors, and even for a developmental pediatrician that also assists us with our biomedical intervention. However, I also wanted an in-network pediatrician nearby for those times when my kids are sick and none of us has the desire to sit in a car 30-minutes each way; not to mention a doctor who only charges us a standard co-pay rather than the full amount of a visit up front that we must then wait to get a meager reimbursement for...oh, the expenses we hopeful parents must endure!

This was the doctor we saw yesterday. He truly is a lovely man; a youngish doctor who is genuinely trying to set up an old-school, small town practice where he gets to know his patients a bit better than in the bigger towns. There are plenty of kids in our town with disabilities, but I get a strong sense he doesn't see many of them on a regular basis; and the ones he does see, I suspect are a bit easier going about doctor visits than poor M is. Whenever we go to see him (which is rarely, thank goodness) he sort of looks at me like 'how do you want me to go about doing this?' In fact, for the required school health check last year, he literally did say to me, 'What of these required items do you think I can check?' I suppose I always respect a person who is willing to admit when they don't know something, but I am so frazzled by the time we are five minutes into most appointments that I haven't even got an idea of why we are there or what my name is.

We got out relatively unscathed yesterday. I only had to wrestle M's very, very strong 62 pounds during an under-the-arm temperature scan and when the doctor was checking his ears and nose. But the times when we have had to do strep test swabs...fuggedaboutit. On those occasions I leave sweat-colored and exasperated; unnecessarily apologetic and embarrassed. I know that the doctor likely takes pity on me more than he does M. He practically said so yesterday with his comment that he felt bad for me because he knew this was going to get even more difficult as M gets bigger and stronger. It left me with a sort of unease because I am in a transitional phase with this hopeful parenting thing; a phase where I am trying my hardest to stop feeling sorry for myself and projecting that sorrow onto other people. I realize that until I can allow that transition to fully happen people-doctors included-are going to continue to put their focus on me and not necessarily as much on M.

As M's Mom and main caregiver and advocate, I have to continue to seek out the best doctors to treat and understand my son. But above and beyond that, I have to find doctors that care about him and want to get to know him. These are the gems we have to seek out to become members of our children's very important teams.

Peanut Butter On Your Penis & Various Other Things I Never Thought I'd Say

I posted the following over at Hopeful Parents today.  Be sure to check out all the amazing parent writers over there!

This parenting gig is full of surprises.  Add the even crazier twist of parenting a child with special needs and, well, it's no wonder so many of us enjoy a glass of wine (or three) each night.

M is seven and has had a big regression in the area of toileting.  I feel the need to knock on some wood as I type how fortunate I feel that this regression is in the area of numero uno and not numero dos.

Regardless, it does pretty much suck to have to clean up pee multiple times each day when trying to keep him in big boy underpants and then having to remember to bring diapers on outings...for your seven year old.  I've had to start buying diapers online through incontinence web sites.  I've found myself spending hours searching to see which site had the lowest price or a free shipping coupon.  The first time I searched for diapers online I clicked on a benign-looking web site with the word 'diaper' in it and was shocked (and fairly amused) to read that it was a web site for infantilists who enjoyed wearing diapers as adults.  Who the hell in their right mind would CHOOSE to wear a diaper as an adult?  Clearly these are not adults who parent children with special needs!  I will say, however, that some of their prices were competitive, and the brands were the same ones you'd find at other incontinence stores...but I just could not bring myself to make a purchase there!  

Fast forward to last week when I decided to purchase some diapers fromOverstock.com.  Yes, believe it or not, Overstock even carries diapers!  (and, no, I do not work there)  Since their shipping price was right, I decided it was worth it to try out the smallest adult-sized diaper that they carried--a size small--since the waist size fell in the range of my boy's distended belly.  

Unfortunately, I learned that though they do fit around his waist, the other--ahem--areas of the diaper do not fit very well.  I'm banking on the hope that M will not need diapers in 10 years (please, please!) so I'm hellbent on using these suckers up even though they are a bit, well, large.  I put one on him for our two-hour walk yesterday in hopes that since he'd be sitting in our jogging stroller the diaper would do the job.  

Not so much.

We had to strip down our poor boy once we got back to our car to drive home, and with no clean clothes with us, (because you forget to bring the change of clothes when your child has suddenly decided to not use the potty at the age of SEVEN!), a very naked M had to be strapped into his carseat for the drive home.  The other half was a bit pale as he delicately tried to maneuver the buckle that clips into the car seat near the poor boy's private parts.  One crisis averted, we finally made it home.  

We were planning to go into the hot tub after a quick snack, so the other half decided it would be okay to feed M in the buff.  It was a warm day after all.

Unfortunately, our little man is not what you'd call a neat eater.  And the peanut butter that was on his apples ended up being put on his...nevermind.  You know where this is going, right?

When he got up from the table and I noticed what he'd done, I was a tiny bit alarmed at how easy the words, 'M, come over here so I can clean the peanut butter off your penis' rolled off my tongue.  As though it was completely a normal occurrence in our lives.  The other half and I cracked up over this and remarked how there are so many bizarre things that come out of our mouths that we never ever would have thought back when we were much cooler (and thinner) 20-somethings, blissfully unaware of the mayhem that lay ahead of us.

Other bizarre things I have caught myself saying to my seven-year-old with more regularity than I probably should admit:

-Please quit chewing on the dvds.

-Don't put sand (or substitute rocks, dirt, seashells, and various other outdoor items) in your mouth.

-Vacuum cords are not chewies.

-Stop drinking the hot tub water.

-How did you get spaghetti sauce inside your ear?

There's really no brilliant way to end this post other than to ask that you all make me feel a bit better about this craziness and share with me and other Hopeful Parents the things you can't believe have come out of your mouth!

Gone Fishin' - A Guest Post

I have followed the following blog for a couple of years now and find Bennie's way with words extraordinary.  Well, that and he knows about the great island of Kiawah in South Carolina!  Those of you who know me personally know that I spent much of my childhood vacationing there, and my parents even retired there for a bit.  It's a special place!
The following is Bennie's recent post on Hopeful Parents.  I thought it was so raw and real--and true of the lives of so many of us parents with kids who have special needs--that I asked for his permission to repost it here.
I, too, have had great difficulty finding the spirit to write lately and I know that much of that is from the ebb and flow of my mood.
Give Bennie's site a gander when you're done reading.  And check out he and Ben's artwork while you're at it!

It’s been awhile since I last wrote here at Hopeful Parents.  My absence hasn’t been intentional – it’s just been one of those times where life just happens…or maybe hasn’t been happening enough to blog about it…or perhaps more precisely,feeling like blogging about it. Okay let me be just a little more honest with you. I’ve been depressed.

Depression is an illness I am very familiar with. In fact both my wife and I are so up to date with the latest new-fangled anti-depressants and anti-anxiety medications that we are surprised we are not called upon by pharmaceutical companies to provide potential patients of possible side effects. You know those advertisements – the ones where Wonder Drug returns you to “normal” life except for the insomnia, hot flashes, diarrhea, nausea, constipation, shortness of breath, hemorrhoids, uncontrollable flatulence, drooling, headaches, affectations for reptiles, dry lips, body odor, hair loss, joint pain, or an odd desire to set your neighbor’s kid on fire.  Like so many of you, most likely all of you who visit Hopeful Parents, the realization that life will never be “normal” again sometimes weighs me down like a cement life-jacket as I float along the Sea of Life.

Don’t get me wrong, just like all of those drugs that keep my son so much healthier these days I am genuinely thankful that some doctor, scientist, or researcher discovered emotional pain relievers. It’s just that depression is another one of those consequences of exceptional living that I…we…don’t deserve. It wasn’t something we either intentionally earned or even wanted. It came with the “whole package.”

And here’s the worst part: of all the parents out there we are the ones expected to hold our shit together the most. God forbid any of us give up, walk away, toss in the towel, deciding there’s got to be somebody else or a social service agency better qualified/capable/deserving/undeserving/needing/willing/ loving/etc. to care for my kid. Oh that person becomes the ultimate pariah of society…the worst of the worst! So we continue letting our souls and spirits descend into a special compartment of Davey Jones’ Locker filled with lead waders and concrete flippers.

But there is the upside: we know how valuable or children are! We do know how much joy and love they bring into our lives. We know how often they bridge the gaps between races, religions, cultures and everything else that divides the rest of us. We sometimes even know of special gifts, incredible potential or talents, accomplishments never expected; diamonds within the coal. This is why we continue “the journey.”

I’ve been casting an un-baited hook for awhile now. The illness of depression makes you selfish which just adds more slag to that weight pulling you down. Recently I’ve run into a few folks that enjoy dropping a cane pole in the water now and then.  They too have occasionally been using the wrong lures to reel in that “keeper” we all want to brag about.  The one we take a picture of...that ends up as a happy news item...something we are darn well proud of. That is the beauty of having fishing buddies – in the end we are proud of how we contributed to that special catch – at least that has been my experience with those I love to cast with. That would be the little fishing community of Hopeful Parents.

Bennie and his much more talented son, Ben, blog at A Work of Art: Raising Our Exceptional Son.

I Knew This Day Would Come...

I'm writing at Hopeful Parents today.
Come take a read!

History Of A Stim

Here I am! Here I am! Here I am!! Go read my latest contribution over here!!

Navigating The System

I'm over at Hopeful Parents today.  Please stop by and read some of the amazing stories other parents share on this great site!