Tag Archives: family

For Friends/Family of Special Needs Parents:

16 Mar

I think this applies pretty well to other special needs and not just autism.

In my virtual travels, I have noticed a major theme and source of extra stress for parents of kids with special/different needs and that is that family and friends that were a part of their life before the special needs came into play (before the child/children were born, before the parents became concerned and started seeking answers…  Anytime, really…) are either no longer present or seemingly unwilling (or actually unwilling) to accept their friend’s often complex responsibilities and family challenges and maybe their friend’s increased need for someone to listen, a friend who won’t judge them, just kindness … A FRIEND.  They could really use a friend. If you still want to be a friend (and this goes for family- immediate and extended pretty equally) but just don’t know what to do, here’s a great place to start:

(I do have other links like this…I’ll update and post them when I can…)

Your Child Has Autism, and I Don’t Know What to Say: Seven Ways to Go the Extra Mile to Keep Your Friendship Thriving

via Your Child Has Autism, and I Don’t Know What to Say: Seven Ways to Go the Extra Mile to Keep Your Friendship Thriving | Delightfully Different Life.

 

Please share this resource!  Us exhausted parents of special needs kids thank you!

xo

B

Across the (autism) Universe…

8 Oct

 

 

 

Parenthood Arrays the Bravermans Across the Autism Spectrum | thAutcast.com.

 

I love this.  theAutcast.com explores how autism really exists in families.  Fantastic graphics explore how the 1 in x many is not black and white, but rather shades of gray (or blue, in this case)…

Beautifully done.

Check it out.

xo

B

p.s. I was sick yesterday and we had a lovely family dinner, this evening, with one of my favorite people, who we rarely get to see.  More later today…

Open Letter (about Asperger’s)

8 Oct

This is absolutely brilliant…

AN OPEN LETTER TO ANYONE WHO HAS EXPERIENCED MY SON’S MELTDOWNS. (click to go to McSweeney’s!)

More later… I’m attempting to not screw up a cake.

Yes. I am baking a cake.

Really?  You didn’t hear the smoke alarms go off? That’s odd.  May I suggest a good audiologist and ENT in the area?

:-)

More in a bit…

xo

Bek

Rolling Rolling Rolling….

5 Aug

You Got To Roll Me….

Originally uploaded by CleverIndie

Keep the dice a rolling

keep the game a moving

don’t ever lose that die!

Rain and wind and weather

hell bent for jenga*

wishing my bro would lose and cry…
*uses a six sided, six color die according to wikipedia.org. Yes. I checked. Would you expect less of me?
We are just getting to the point where playing board games is not eerily reminiscent of my childhood (as an only child, living in the middle of the woods, no cable, and I was the weird kid. I learned to play every game by myself. Even hide and go seek. It’s true. More on that someday. I’m just starting to own that part of me.)…

Alex will sit and play and follow directions (with a great deal of repetition on our part) for a little bit- though his attention is still somewhat short…

All of the games we have happened upon lately seem to have die or dice involved. We have been rockin’ the Monopoly Jr., Clue Jr., and Mouse Trap.

Part of the motor skill challenge has been rolling the die or dice (and actually having it change to a random side). Part of the “I have an almost 6 year old” challenge has been getting him to not pretend to roll it so that he miraculously gets 6 every time, because at almost 6 bigger always seems better even if it gets you sent back to the start of the game board.

We also tend to play around our lovely Noguchi glass coffee table as we can all sit comfortably (and my work is usually overpowering our little kitchen table…Still want my Edison farmhouse table. Someday it will be mind. Someday.) Not only is there glass, there are a few choice knick-knacks near by that are probably not-so-durable and there are two big club chairs and a love seat. My arthritis refuses to get down on the floor to retrieve overzealously thrown dice (actually it’s more of a problem evolving back into an upright position these days).

And I fear glass chips and broken knick-knacks. And face it, my kiddo is wonderful with many things, but his motor skills are a major work in progress.

So here is my solution.

I took a tin with a clear lid (the lid covering is plastic- I do not suggest trying this with a glass-topped tin) that is of the “deep” variety (I got them from SpecialtyBottle.com – the one shown in my image is a 4oz/deep). I popped the die in, closed the lid (the lid isn’t terribly loose but it is not secured outside of friction- so if you feel you need a sturdier hold try some masking or electrical tape around the edges.

And voila! Alex can shake-shake-shake and I no longer have to go fishing for game pieces, the coffee table is intact, and my curios are happy campers and have removed their helmets and safety goggles.

This also helps teach him the rules of “rolling” – he has to give it a few shakes and put it down. This has made a huge difference in his comprehension of rules- those of the game and those little social game play rules. Eventually he’ll roll by himself, but for now this lets us play and show him the joy of playing boardgames as a family. He can focus on playing and not obsessing over this one small part.

The containers are too big to squeeze into most manufacturers game boxes and I like to keep all parts in their respective boxes, so we have one “rolling” container. If he was younger and more apt to try to consume the parts during game play, we would probably secure the lid more permanently.

xo
Bek

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Just keep swimming. Just keep swimming.

13 Jun



Pedal

Originally uploaded by CleverIndie

Physical Therapy (for me) ended yesterday.

The loss of my only undivided me-time has brought up many things.

Lots of tears.

This was my first break in almost 6 years. I had 18 hours where I wasn’t in charge, out of almost 50’000 on duty and on high alert.

I’m exhausted. I’m angry.

The true colors of some people are really shining through, and not in a good way. Having a not-readily-visible disability and a child with different needs brings out the narcissism in other people. It’s partly the myth of the supercrip. It’s partly their choice to live in denial. It’s a whole lot of their narcissism. If they don’t accept a fact then it doesn’t exist. It’s like “La la la let’s pretend everything is ok and then it is! And if it isn’t lets kick the person when they fall to the ground and then call them negative when they tell us to stop or start to cry! She’s dead from our kicking? She is cured of her disability! Isn’t positive thinking grand!”

Ok. A bit of sarcasm (just a dash, right). But I don’t feel like boring you with back story. And positive thinking is wonderful. It’s the kicking and the holier than thou-isms that I have the problem with. It’s also the living in denial part- ever wonder why disabled folks are often depicted with a chip on their shoulder? The loss of certain abilities eventually (over a variable passage of time) becomes accepted fact, but the bitter pill to swallow is the loss of family and friends and the feeling of being tricked, cheated, resented, and lied to by supposed loved ones who invent their own truth rather than bothering to listen to the one person who has experienced it. Try trusting anyone after people who were once at the very core of your world and your family decide what you can and cannot do, not based on any reality except their own needs, and if you try to explain you get labeled as selfish or lazy or negative. And if you do what you can to help them with their needs it is never enough. Any which way, you wind up being judged rather than accepted.
It’s a losing battle. I feel stupid for even trying to fight it. I have to learn to conserve my energy and to say goodbye to those who cannot see past their own noses.

I’m in that really weepy (ok, sobbing) part of building up to cutting off my hair (not really going to hack it off, yet), blasting “The Warrior”, and moving stompingly forward.

But I’m tired and my body really really hurts.

No support for this broken body.

Fact. Not whining. Not negativity. Just fact.

I’m putting this out into the universe because my voice is hoarse.

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