update 4-18-12

Sorry it's been 4 months since my last post (however I am not sure there is anyone out there reading anyways, but if you are thanks for hanging in there with me)

We have been very busy with doctor visits, we have a conformed dx of sever ADHD and SPD and are waiting the results of the ASD testing on April 24. We have tried 5 different ADHD meds at this point and nothing is working, if it even helps with the attention/focus it comes with bad side effects, with one he couldn't stop talking, I really mean that there was not a second he was awake that there where not words coming out of his mouth, another one made him cry ALL THE TIME, another gave him headaches, and our current one makes him angry. Makes me want to bang my head against the wall. It was hard for me to be ok with meds in the first place, but he was struggling so much that I really felt it would be worth the try, but now I'm second guessing things again.
We did OT for a month or so, but do to the crazy meds felt we where not getting anything out of the OT and have paused it for the time. W will be starting social group classes on Thursday at school and hopefully this will help him out also! Everyday is a struggle for W and my wish is that one day he will just be happy, one day with no tears or anger just a great day for him, and then eventually I wish that he will have more good days then bad.

a nice holiday

It's been just that...a nice holiday! I was ready and set for the chaos that is my everyday life to be a hundred times worse this weekend/week but to my surprise that has not been the case. I am unsure if this is a result of me being less stressed, and slower to anger (meaning maybe people are still just as clueless and I simple don't care) or if after my FREAK-OUT at thanksgiving everyone was simply trying a little harder or what but it's been nice.

There of course has been times where W has been on sensory overload and his ADHD has been in full force, but that I can handle (with the help of my wonderful husband E) those things I handle everyday. And the true happiness that W has had this weekend/week gives me hope for his/our future.

At times I worry because at 6, W, seems to carry all of the worlds sadness in his own hart. And the fears of a thousand in his mind. However this week he has gotten to just enjoy being a 6 year old, who Santa brought just what he wanted, and for now all is right in his world. I will admit that while he got lots of great presents he has thought/played with one with almost the complete exclusion of all others but that's OK, his obsessions have a new home for now (skylanders)!

K and T have also had a great holiday filled with lots of new toy's and presents, and have had a great time visiting with all the family. They are great kids, all three of them, and really remind me just how great life can be/is!

This holiday I have received the greatest gift, a happy family! A little less stress about doctors or dx, or how to raise my special needs child and my other 2 children in a way that will let them grow up to be happy, well-adjusted, caring adults! For today we are just a 'normal' family spending a great holiday with our family and enjoying life....it's a great gift!  < course my Kindle Fire is nice too ;)  >

Happy Holiday's

Merry Christmas, Happy Hanukkah, Feliz Navidad, Happy Holiday's or whatever term is 'correct'!?!

Christmas is a time for happiness, joy, sharing, and family fun, however if your W, it will bring, tears, anxiety, fear and meltdowns of epic size. Now don't get me wrong he is very excited that Santa will be bringing him presents and really loves the magic of Christmas, but as his momma I know that it will be several days of over stimulatingg, loud places, and sensory over load, while W tends to be a seeker, strong hugs and throwing his body into things he is also an avoider, load noises, to bright or to dark, or just the unknown in general causes him fear and stress...

And of course being the person I am, I will/am stressing over what is to come and how to navigate it in a way that will cause the lest amount of upset for everyone. 

The last big family holiday (Thanksgiving) did not go over well, and I have fears of a repeat. This is all still knew to me, while we have known things where not quite 'right' with W for a long time, this will be the first holiday having a real dx, and that's a game changer. Finally I have real answers to give, and not just we are waiting, we think maybe.....but he has X,Y,Z and these are the reasons for all you see and don't understand!

However I am fully aware that there will be/are those who can not and will not understand either because these things are so foreign to them I might as well be speaking Russian, or my favorite the 'there ain't nothing wrong with that youngin, whoop his ass' types assholes, or those who simply blame me, the ones with 'perfect' children, and the 'I'd never allow my child to xyz.... (who are just as bad as the whoop their ass group). Last time all of this lead to a panic attack, on my part, because of all the stress and anger...

How do you explain to family, things they don't understand, and better yet why should I HAVE to? I want to scream "step out of your close minded, narrow view of the world and see, just see past the nonstop talking, the running circles while talking to himself, the "talking hands", and the inability to fallow what may seem a simple instruction, and just see this child, MY child and all he has to offer you and the world, I can guarantee you that he is one of a kind and has a whole world to share with you if you'll just allow him to.

I should add that this is not all of our family, and not everyone makes me want to scream, but I seem to spend 90% of my time trying to explain my child and my parenting, and this Christmas all I want is a little understanding, and the strength to say " It's not my job to educate you, he has XYZ go google it yourself and back off dunb ass"

So Merry Christmas, Happy Hanukkah, Feliz Navidad, Happy Holiday's or whatever term is 'correct'!?!

And for the New Year my motto is "you can't fix stupid"

SPD share

I got this from the Sensory Processing Disorder Foundation (http://www.spdfoundation.net/) and had to share....It made my cry...



Twas the Night Before an SPD Christmas
T’was the night before Christmas, when all through the house
Not a creature was stirring, not even a mouse;
The snack packs, arranged on the counter with care,
In hopes, on our journey we’d be well prepared.
The children were nestled all snug in their beds,
While visions of Chex Mix danced in their heads.

Ma in her hoodie, and I in my sweats,
Were to put away pillows and therapy nets.
When in the back room there arose such a clatter,
I ran at full sprint to see what was the matter.
When, what to my wondering eyes should appear,
But a puzzled old man buried up to his ears,
(In scooter boards, swings, and small colored spheres.)
Poor devil had brushed ‘gainst our therapy stash,
When it came down around him it made such a crash!

He recovered with grace, so lively and quick,
That I knew in a moment it must be St. Nick.
“What is all this stuff that you people collect? Are you Circus performers?”–the old man interjects—
“I came here with toys, for the boys and your girl
But looking around I think ‘what in the world?’

This room that would normally have children’s stuff
Is packed to the gills with equipment enough
To start your own CIA torturing session!
Tell me I’m wrong and you’re not!” (oh good heavens!)

My wife and I snickered and held out our hands,
And reassured Nick we’d had no evil plans.
“Our kids have a condition; they have a hard time—
They yell when it smells and they climb up the blinds.

At first we didn’t know just what to think,
But eventually found an OT who could speak
To their curious quirks and aversion to crowds
And toothpaste and barbers and things that are loud.”

St. Nick answered back, “So, then they misbehave?”
We answered with, “Actually, no, they’re really quite brave.
Kids with SPD deal with all kinds of things,
Like big hugs, itchy tags, and loud alarm rings,
Or can’t get enough and spend hours on swings.
You see, our children are sensitive to all that life brings.
Yet do very well with a consistent routine.
But it isn’t bad behavior you see when they yell,
But rather a problem that is hard to tell.

Our kids work hard, at therapy and play
Spending hours and hours and hours each day
Trying to find ways to control their bodies,
And working hard not to look naughty.
But what they need is understanding, and some help along the way,
Because our kids amaze us, each and every day.”

The old man looked surprised, at what we had shared,
Small children with parents who did what we dared.
To seek out help, and look far and wide,
Turning over each rock, letting nothing hide.
Until we found what they needed, what would make them feel whole,
For families like ours St. Nick couldn’t leave coal.

So, Nick with the bundle of toys on his back,
Frowned and thought, then sullenly sat,
(And mumbled to himself which took us aback):
“I’m quite at a loss, I don’t know what to give
To children who struggle while trying to live
In a world that is already noisy and bumpy
And twisty and scary and thorny and jumpy—”

Then he rifled again through his sack and reposed
While he tugged at his beard, and scratched at his nose
(And he huffed and he chuffed and he shifted his clothes).
Then with a wink of his eye and a twist of his head,
He drew the sack wide till the seams popped some threads,
dug in his hand and pulled out a small box
(with very small writing) –but before he could talk
He ungloved his hand to wipe soot from his eye
(Or was it a tear? Or perhaps a sty?)

So he bid us farewell, and went back to his work,
He filled all the stockings; then turned with a jerk,
And laying his finger aside of his nose,
While giving a nod, up the chimney he rose.

I said to Ma, as she turned towards the tree,
“Who knows what St. Nick left us, we’ll have to see.
Yet we gave him something great, I say with fairness,
we sent him on his way with a new found Awareness.“
Which is a gift to our kids, in a different kind of way,
Because when all understand SPD, that will be a new day!

Now we looked o’er the copious gifts left behind,
The tiny collages of paper and twine,
The moon-sparkled ribbons, the plastic that shined,
We spied the small box for the children to find.
“The best gifts can be pretty small–” Ma started then said,
“But our best gifts of all are still snuggled in bed.”

This Holiday season, you SPD Fathers and Mothers,
You cousins and nephews and sisters and brothers,
When you wake in the morning and throw off the covers
(And tear into presents while everyone hovers);
Do you think ‘Will I get what I wanted this year?’
Or realize ‘all that you need is right here!’
You might think it’s corny, but surely remember
Your children are better than any gift in December.

And in case you were wondering what Santa had stashed,
It may not surprise you; it might make you laugh,
“What did the children receive?” you may ask?
Well when the snowy chips are down……
even Santa gives cash.

what it is

Part of me thinks I should take the time to educate everyone about W, since I'm sure most of my postings will be about or a result of him, however, if you are reading this then you should know how to google something so here are the simple facts:

W is my oldest child, a 6 year old boy, dx with sever ADHD combined, and Sensory Processing Disorder (SPD) and a possible dx of Autism Spectrum Disorder. (now go google all of that and come back)

I'm not going to go into ever detail about what all this means, look it up, have a general idea and then when you are reading the rest of my post you will know what ADHD, SPD, and ASD means.