My child is a cheating cheater

Summer break is here.  Chris has been playing tons of games lately.  He loves playing his Thomas Memory game as well as Operation.  I just love playing with him.  When we sat down to play Thomas Memory, Chris decided that he would play by his rules.  He was taking his turn, not finding a match and going again, and again, and again until he did.  After he found his match he would yell "WAHOO" and "I'm going to win!"

Joshua and Chris going for a hug.

PYHO: Wheelchair for my 3 year old

I knew my child would outgrow his stroller sooner than later.  Afterall, he's a big boy.  We measured him last week at 42 inches tall and he's a big over 40 pounds.  I didn't realize that this genetic syndrome he has would leave me no choice but to look for a wheelchair for him after he outgrew his stroller!  We need to get something for him.  He gets tired easily and will ask to be pushed or picked up and carried.  I didn't realize that the next step would be a wheelchair.  My heart hurts.  Just one more thing to set him apart.  I had my rosy colored glasses on thinking he'd magically be "ok" and not need the help anymore.  It's like reality came and tore the glasses off and stomped with them shouting "NEENER NEENER!"  I want to crawl in a hole.

Not only that but the insurance will only pay 50% of the cost.  They are around 2000.  I don't have that kind of money laying around.  I don't even have 50 dollars to spare right now.  All of my spare money is going to...that's right...I have no spare money.  SSDI took away benefits and is now making us pay them back plus the medicaid that paid for things is now being pulled out and we have to pay everything from January to the end of March.  The caseworker made a mistake and estimated rather than took what was real.  She thinks we make 2000 more a month.  We don't.  Now I have to figure out how to pay over a thousand dollars back to our therapy place for Chris for his PT/OT and aquatherapy AND I have to pay back over 3K in SSI that they sent us.  Can someone dig that hole deeper for me?

I've got something more

SOME MOTHERS GET BABIES WITH SOMETHING MORE… My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. O...f course, that’s what she says. That’s what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more.

Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.

The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.
-author unknown

My graduates

Jon and Matthew graduated from preschool on Monday.  It was THEIR last day of school.  Today was Chris' last day of this school year.  His Extended School Year starts July 11th.  We are going to our genetic study that time so he'll be off that week.  My baby boys are starting kindergarten this fall!  I remember when they were itty bitty babies and now they are preschool graduates.  They have grown past the baby stage, the toddler stage and now the preschooler stage.  My babies are now young men!

They have blossomed into amazing young men who would make any mommy proud to call them her own.  I am so thankful for them and look forward to what will come in the years to come.

You like me, your really like me

I was given this award by http://bcimthemommy.blogspot.com/ who is a cool lady who has something in common with me.  She has a child with autism and twins.  She also has a wicked sense of humor on her!

I need to tell you all 10 things that you didn't know about me so here they go:

1) I am a slob!  If you knew me in real life you'd agree!

2)  I swear like a sailor/pirate/truck driver.  When I get mad you'll know it by the string of profanities out of my mouth.  It would make anyone blush.

3)  I have lived in 2 countries, 3 states and 6 towns.  It all started one dark and stormy night on an Air Force Base in Bitburg, Germany.  There was an air raid drill and the OB that delivered me was fresh that day.  It was his first day.  My poor mom gave birth with no power and a newbie doctor while she had no pain meds....They moved back to the US when I was a few months old.  I grew up in a very small town in PA, moved to another part of the small town with it's own zip code.  Next, I moved to Abington, MD.  From there I moved to East Stroudsburg, PA and there I met my husband and moved to where we are now in NJ.

4)  I drink way too much soda.  Pepsi to be exact.  I swear I am going to wake up one day to stumps for teeth.

5)  I didn't have a cavity until I was an adult.  I had my first cavity at age 24.

6)  I have Wolff-Parkinson-White syndrome.

7) I had an unnatural obsession with Jim Kelly and the Buffalo Bills when I was a kid.  Him and Mike Mussina.

8)  Jim Kelly had a childhood friend in prison and would visit him.  My dad worked at the prison and told Mr. Kelly how much I was obsessed with him.  He went home, took pictures of his home and had people take pictures of him with his dad for him in their basement/game room.  He autographed them.  I'm not selling.

9)  I have a Magic Johnson autograph.  I became obsessed with him as a teenager.

10)  I wanted to grow up and be just like Magic Johnson and play basketball for college.  In reality, I got pregnant my freshmen year of college and wasn't a good player.

Now I have to pass this award on to a few other bloggers.....

1.  Matt Millsaps at My Cup of NooDles because he's a great brother/kid/person who is writing about his adventures with his little brother NooDy.

2.  The Drama Mama over at The Scoop on Poop cause she's the best on line in real life BFF a girl could have who she's never met :)  And she's my Lovey Loo!

3)Shell at Things I Can't Say cause she'll a cool tweep.

4)  Grumpy Grateful Mom at Diaries of  Grumpy Grateful Mom for giving me lots of laughs.

and last but not least

5)Lola at Autism and Aspergers Awareness Jewlery cause I'm trying to pimp out her wonderful jewlery.  She's amazing.  I don't say that a lot about people.  I hate to wear jewlery and I've been wearing her necklace every day since I got in in April AND bought ear rings for Chris to give out for end of the school year gifts.

Wordless Wednesday: Toothless Matthew

Shit my kid ruined

Friday afternoon Jon wanted to watch Star Wars in his room.  All three little boys followed and as I was making supper I heard "Boom!"  "CRASH!"  "BOUNCE, BOUNCE".  When I went up to see what the boys were doing I walked in to this

He stripped the sheets off of all the beds in the kids' room, took the matresses off of the beds, and started bouncing up and down on the matresses.

Shake-a-phrase

I had the pleasure of reviewing a new application called Shake-a-phrase for the ipad/ipod recently. Although I personally don't own an ipad, I borrowed a friend of mine's kiddies to do this for me.  Shake-a-phrase is a wonderful, engaging, fun application marketed for children ages 8 and up.  My friend's son happens to an energetic fun loving 9 year old, who just so happens to have Asperger's Syndrome..

My friend's son really did enjoy playing with the game mode!  He and his younger sister thought the different types of sentences and laughed their way through the silliness that came with the different phrases.

The application had three different types of modes: shake it, quiz me, and story starters.  Shake it shows different sentences: sentences about animals, about fairytales, and about monsters.  This mode allows kids to touch a word and see the parts of speech and what the word means.  There was also a mode that was a story starters.  My friend happens to tutor in reading and said she was able to use that mode while in her tutoring to help students in their writing.  Quiz mode allows kids to use the knowledge they gained in shake mode to identify parts of speech in the silly sentences they are presented with.

 I could see kids laughing through the game, between shaking the ipad to get to a new phrase or sentence to the goofy sentences that will make you laugh out loud.  This is an application that both kids and parents will enjoy!

Today only in a joint effort with Gary James and his Apps For Children With Special Needs site, Shake-a-Phrase is FREE for anyone that would like to get it! I hope you enjoy as much as we did!

When I grow up I'm gonna be a teacher!

I was scared when my twins started preschool this year with a newbie teacher.  Don't judge me since I'm a teacher but I totally thought "I don't want my kids with a 20something child."  I gave it a try though.  Something told me it was going to be a hell of a year when the back to school night started with an "UM, my name is Ms. New Teacher and LIKE did you see my picture in the newspaper?" as she flipped her hair.  Something about her just SCREAMED middle schooler.  Then she went into her speech about how she needs to get through her curriculum by the end of the year.  I may have tuned her out at one point after the millionth UM and LIKE.

So, this year my children have learned how NOT to write their names as in Jon has become NOJ and when I question I'm told I'm picking on her.  My kids haven't been read to every day as she has too much to do with the kids.  This like, as 4 year olds in a preschool program, they were expected to correctly do fact families.  I did that when I taught in 2nd grade.  Perhaps my kids are slackers since they couldn't do that.  Sorry, their applications to Princeton were late.  I thought it would get there sooner since we live 15 minutes from there.  Perhaps my child shitting himself daily was the reason that Matthew didn't get in?

We got into an tift about that.  She wanted Matthew put in a different placement because of his enocrpresis.  She didn't want to have to change him.  She hasn't had to change him nor has he let on that he has had accidents while in her care.  I don't know how she couldn't smell him.  Like, um....shit stinks.  And, I'm the one cleaning his ass daily.  Don't ya think I'd love to NOT have to?

She's sent Jon home with bumps and bruises on him and a huge goosebump on his head.  She's not helping Matthew with his water bottle.  I've asked her more than once to help him.  He's got a fine motor delay! Today she told me that she had too many kids in her class that she couldn't help Matthew fix his water bottle.  Perhaps a 4:3 ratio is too much for her?

I swear this is what my kids walk into every day:

What a difference a year makes

This time last year we were in the throws of evaluations for Chris to have him transition from Early Intervention to Preschool.  This time last year he had about 10 words, if that, that he used regularly.  He wasn't able to be understood with those words unless it was in the context of the conversation.  This year he's doing this:

Mama got her break

It wasn't the kind of break that I was envisioning with sights like this 

And tastes like this 

and a cabana boy to fan me that looks similar to him....

Instead I got the sights of my bed, with the drink of choice being water and a boy that looks like this 

saying things like "Mommy, I make your ear feel better!" 

Now that I'm hopped up on a zpack and a few more over the counter things I'm hopeful that my sinus and ear infections will be cleared up soon.

Then mama can get back to enjoying the sights of these cabana boys as well