To be the Queen of Chaos, you have to be a little warped.

Archive for the ‘Special Needs’ Category

It’s Like Starting Over

Yeah, I kind of crashed and burned for a while on this blogging thing.  I haven’t really known what to say or how to say it without coming off as whiny.

I’m doing my best to juggle everything that is on my agenda these days.  I don’t like to do things half-assed, nor do I like to feel that there are limits to my capabilities, so I can’t say I’m too happy with my efforts.

I’m tired all the time, mostly because I don’t sleep well.  I’m in the worst shape of my life.  I look like I just rolled out of bed most days because I either don’t have time or can’t be bothered to actually get ready fully in attractive, flattering clothing with hair and makeup done.  I’ve been taking more short cuts than I prefer to on things like cooking and cleaning.  Basically, I’ve been trying to use all the energy and enthusiasm I have to meet the kids’ most pressing needs – therapies, homework, health and personal stuff, activities, etc.

Also, my anxiety symptoms have kicked up a bit.  I’m well aware that I may have to do some level of preventative maintenance for the rest of my life where that’s concerned, but it’s been hard for me to refrain from thinking, “Now?  Really?!  Because I don’t have enough to deal with?!”  That’s the devilish truth about anxiety – it loves to creep in and stir up trouble when the boat is already rocking.  Asshole.

So basically, I’ve been kind of vacillating between stressed, anxious, and depressed, all while trying to hide it from my kids and cope in appropriate ways.  Listening to my ipod and knitting a lot again – let me know if you need a hat or some shit.

The biggest struggle I’m dealing with currently, though, is probably the Guilt Monster.  I feel so obligated to make the right choices and do all the thinking, researching, and planning for Jasmine.  There’s just no shutting up that little voice that says, “This is all your fault, so it is your responsibility to make it right.”  That same little fucker also likes to say, “One wrong decision made by their mother – who is always supposed to get it right – could ruin one of these girls forever.  Their future happiness depends on you giving them a perfect childhood.”

Basically, life’s complicated these days.  I wish I could say I have my normal level of enthusiasm for upcoming pleasures, like our vacation or the holidays, but I don’t.  Most of that stuff feels like one big to-do list that’s following me around, poking me in the back of the head, taunting me.

So there it is.  It’s whiny, it’s grouchy, it’s a downer – but at least it’s a frikkin’ post, right?

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How To Make Parents Worship You (Especially If Their Kids Have Special Needs)

Everybody’s got a cause these days, myself included.  We all want people to see the importance of the things we believe in; we all want to change the world.  Most people are well-intentioned when they spread their message.

Let’s face it though – the reality is that people generally “get it”, or they don’t.  A lifetime spent trying to get everyone under the sun to agree with you is probably a waste of time.  When I write out my opinions here, I’m sharing them with the hope that I might offer a new viewpoint for an open-minded person to mull over.  It’s up to them to decide what to do with the information.

People are largely unresponsive to complaining.  It becomes tedious to read, too, so that’s not what I want to spend much time doing with this blog.  I’m also not suggesting that I have any authority over others’ choices – free will is a wonderful thing, despite its occasional misuse.

That being said, in this post I’m offering up some suggestions anyone can do to endear themselves to a parent like me.

1. When in doubt, discreetly ask me what is permitted or acceptable for my child before offering it.  Few things are trickier to handle than, for example, a child with a milk allergy who’s just been offered ice cream.

2.  If my child spends time at your home, consider ways you can make them feel welcome.  That might mean relocating some collectibles, closing off certain rooms, or locking the backyard gate.  You are under no obligation to do this, of course, but I AM under obligation to keep my child safe and out of trouble.

3. Remember that parenting advice is almost NEVER welcome unless it is specifically asked for.  Allow me to deal with my child’s routines and discipline without interference unless you are asked for help.  Sometimes it is more complex than it appears.

4. Ask me how best to interact with my child.  Learn their likes and dislikes, and be accepting of what they can and cannot do, even if it seems like they “should” be able to do Task X by their age.

5. Understand that my child cannot always perform for your entertainment.  Hugs and kisses on command, posing for pictures, or demonstrating new skills may be more stressful for my child than you’d imagine.

6. Life is not a contest.  Nothing good can come from comparing your misfortunes with mine, measuring my child against another, or trying to categorize how “easy” or “hard” anyone has it.  This isn’t a race, it’s a journey – there is no grand prize at the finish line.

7. Believe that my whole family is doing the best we can.  My husband and I are trying our best to be good parents, my kids are trying their best to be well-behaved and responsible, and my child with developmental delays is doing her best to navigate a world that doesn’t always “speak her language”.   Focus on our accomplishments more than our shortcomings.

Bears

Mess with my cubs and you mess with ME.