Monday, April 26, 2010

why the puzzle piece works for me

I'm puzzeled by Ben.
I was reading an expert from a Dr. I forget his name, but he talks about how difficult it is for autistic kids/people to communicate. And I believe that.
But why is it so easy for Ben to communicate some things?
If I sing, he's VERY able to let me know he doesn't want me to (Everyone's a critic)
If I ask if he wants to go swimming, he's able to communicate an emphatic yes.
Everyday he knows to ask for the cookie I'm packing when I pick him up from daycare,
yet.. everyday, he doesn't get "Bye Mommie" right.
What is the key, or the missing puzzle piece that let's some things be so easily communicated, clearly!, though typically in an elementry way, while others seem so COMPLETELY out of reach.
Is it points of interest? Some things get through while others stay way on the outside?
I'm puzzled!

The glass is half full

Often I think I complain. If I weren't so "young" I'd swear I was going thru menopause. I'm just getting bitchier by the day....

With that said, today, on a rainy monday, I'm going to look at my glass 1/2 full.

1. Ben is completely potty trained. He wears underwear (or nothing) to bed, and stays dry. He hasn't had an accident at school in a long while. Yeah!

2. Ben wanted the dog to play with him last night. He went into our bedroom, and when I went to shoosh the dog away, he told me "No Way!" He wanted the dog to play with. I have to think that's a positive

3. I'm not pregnant... hahaha.. always a good thing for me (Can't get pregnant anyway, but I'm the one who would say that... and BAM

4. Ben is a complete and total Daddy's boy.. Frees up some time for me.

5. I got the house clean this weekend. The husband helped, and as much as I HATE!!!! to clean, put my head down and just did it. It does feel good when it's all done.

I think I hurt myself coming up with the positives. I'm at work, so I'll close the door and rest. (something I can't do at home) (hahaha)

Thursday, April 22, 2010

steamed and again...scared

Tuesday there was a "historical" vote in Cherry Hill. It was the school budget vote. New Jersey Governer Christie encouraged all to vote no for the budget if teachers didn't take a pay freeze. This after the state had majorly cut funding to school districts, special ed, etc. (I hate that MF)
With that said, I did go, and voted to approve the school budget. My opinion.
The budget did not pass. It was defeated by about 500 votes. Cherry hill is pretty big, so this was a minimal amount of votes.
I could deal with it. For me and Ben... it doesn't matter overly much. He's going into a contained kindergarten and the state (at least for now) mandates 1 teacher and three aides, no more then six children per class.
There's a talk radio station. I don't listen to them, because like many talk jocks, their job is to annoy you enough to call in, get ratings etc. They had been big proponents of not passing the budgets also. I wondered how they had reacted to 60% of jersey schools not passing, and thought I'd tune in for a moment.
Well.... The first caller I hear is a teacher in South Jersey. She feels money is wasted, and it's because "everyone" needs to be included. Are you kidding me? This is a teacher? Now the jocks ended her call, and made it sound like she was suggesting kids be grouped by ability like we were when we were younger. I knew better what she was saying.
The next call... and I shit you not... was from someone who worked in the school district. I don't know if he was a teacher, janitor, landscaper... but.... He feels money is being thrown away on Special Ed. He went on to say that special ed teachers are plentiful, because they can only work with so many kids at a time, and dare he say... we the parents are demanding services.
I was rounding the bend toward home, and at that point just turned off the radio. I was too stunned for words. This came after reading a blog: ://roostercalls.blogspot.com/2010/04/walking-plank.html
The blog talked about a kindergartner being teased by his peers. I had left a messege saying it was up to the teachers and staff to ensure kids understood the child, and that there was no room for teasing or singling out this child... or there would be consequenses... etc.
Then I heard the school staff of my state talking about specail ed kids, and knew that the hopes I had of relying on the public school staff would be changed forever.
Did you ever have something, hear something, see something... that you knew wasn't going to leave you. Their ignorance and inflaming comments were it.
I know I can be prone to theatrics (I would deny it to anyone I live with)... but seriously... it reminded me of pre-war germany where the jews and infirm were identified as being the ones who were preventing the masses from having all they wanted. are typical parents going to begin to see my child as someone sucking up their resources and resources that could be used for their child " who could actually benefit from it"
Beat night last night.

Monday, April 19, 2010

Defined or Titled

When I think about how I am defined, there's several titles that come to mind.
Mrs, Spouse, Mother, Daughter, Work Title, Home Owner, etc. You get the idea. Fill out a survey, or school paperwork, and you're asked to define yourself several times.
Where is this going?
We went to the Philadelphia Zoo yesterday for autism awareness day. Had a great time, they really do a lot for it. There's a tent with entertainment all day, vendors, and several families wtih children on the spectrum.
Probably could also say, many suprised families that had no idea it was a specail event at the zoo, and probably wished they had picked a different day. That's not being cruel or thinking they're cold. It's got to suck when your kid says multiple times, "what's he doing, is that boy in a wheelchair, what's wrong with them?" I know there was a recent time, I would have sunk into the ground.
We had Ben in his new "stroller", and I had thought it was wheelchair esque, but now I'm sure. The whole "Is that boy in a wheelchair?" was directed toward Brent, and the poor dad probably got a callouse wheeling out of the area so fast. LOL
Anywhoo.... Brent is a huge advocate. If there's an autism awareness item to be bought... he's there. Got himself a t-shirt, we bought a few stickers stating someone in this home is autistic. One for the house, and one each for our cars, in case. He bought himself another big ass magnet, which he put on our fridge. Our fridge already has a sticker on it.
I didn't say anything, but I don't want it there. Ben doesn't get it or notice at this point, but WHEN he does.... I don't want him being defined by autism.
Is autism a title or definition? I'd like to go with title. Son, student, baseball player (hopefully), autistic. My fear is that Autistic will take it.
Just think. Of all the titles you have, which one defines you? I can't grasp on to any single one. Each is very important to me.
I also don't want one to = Ben.
I don't know. What's the answer. Have I not accepted this yet? Am I trying to deny it? Does Autism define him?
I didnt' say anything to Brent about the fridge magnent. Maybe I'll just hide it. Blame the dog.

Wednesday, April 14, 2010

the dreaded haircut

Well... we have no choice.
This weekend we will do the WORST!!! chore of all in our house. The dreaded haircut. While I was looking at bens hair (a lot of it!) I started dreading it.
It's another of those places where you just feel so different. I hate the other parents staring with utter pity. I can't go PMS'ng or I'm tearing up, and just making it worse. Ugh!
So let's see: Haircuts, Dr's visits, preschool pickup, any public shopping place, restaurants, the park, ahhhh I'll make it simple, outside our four walls. All the times you stand out and you're "different" HATE IT!!
Brent and I even laugh that we are so below the radar type people. Never want to stand out. Go figure!
Every morning when I leave for work, I go thru it with Ben. Those milestones that just don't happen.
"Bye Benjamin!" he glances at me "Bye Benjamin". "No Ben... you're supposed to say bye Mommy" Every morning. Come ON!!!! The same sentence, the same way, every day.... WHEN???
The daily guilt. I'm not spending enough time with him, I'm not working enough with him, I'm not cuddeling him enough... AHHH!!!!
Believe it or not, I'm in a good mood. (Bet you'd love to see me bad!)

Monday, April 12, 2010

when ornry = funny

It was a beautiful weekend in jersey. Many of you out there probably don't believe that's possible... but jersey gets a bad rap.

I'm sure I've mentioned my husbands pond out back, and our dogs LOVE for the pond. Well... this weekend it came to a head.
My husband arrived home friday evening with a car full of chicken wire and metal posts. One peek out the window, and I knew....
Saturday morning arrived, and said posts were laid about the yard. He looked like he was struggling, so I went out to lend a hand. Fortunately we work well together. He had BIG plans on encircling half the yard, I put the ole kabosh on that.
Anywhoo... the hated mother-in-law stopped by to take Ben for lunch. He cried when he heard, my husband walked him out to the curb, put the car seat in, and off he went. I hated to see him go, since he's so unhappy, but he does come home in a fine mood, so... what can I say. an hour and a half per month, whatever.
Back to the yard. in that hour + we were able to get the stakes in, the chicken wire attached, and my husband sat back to enjoy his work.
The whole time this is going on, the dog is whining and whaling in the house. The time to test is here... the door opens... and the dogs starts. he's chewing the bottom of the fence, pulls it up... he's in. Husband gets tent stakes and stakes down the fence.
Dog looks for the weakest link... finds it by the "door" being held closed with eye hooks. A few good rushes, and bam... he's in.
If you could have watched the two of them, I can't tell you the hours of enjoynment it gave me. I think the dogs in his teenage years, and the power struggle was more then I could have imagined.
This fence, pond clean-up, etc was a two day affair, and I'll bet the neighbors had a bit of entertainment themselves.
Great weekend in Jersey.

Friday, April 2, 2010

National Autism Day

I wish I could write like this: http://adiaryofamom.wordpress.com/

Thankfully she can.
This mom talks about our children needing acceptance. We as parents looking for understanding. Commodities in a tough world sometimes.

As a positiive, I think back to elementry school, and recognize the two children there I believe were autistic. As young children, we were facinated by Chucky and his flapping hands. Many of us imitated him. Not making fun of him, but just interested in how it looked and felt. innocence of childhood.
Later I remember a girl Dina. She was bullied, I just don't think she knew. We'd all raise our feet when Dina walked across the floor. She smiled and laughed and thought it was a game. THANK GOD!

I remember the first child I recognized as having autism. He came into a restaurant I was working in and rocked and repeated phrases. I was completely unfamiliar with autism, but recognized this wasn't an example of poor behavior or parenting.
I've been lucky. I still haven't had that "incident". I know it's out there. I know the time will come. What will I say? How will I do? I don't know.

With bullying being front page news lately, what parent of an autistic child isn't haunted by what could happen. Who hasn't revisited every time in their past when an act of kindness was too much to ask. I could be a rotten kid sometimes, but even back then, I recognized something wasn't right. Did I stand up, no.

I think kids are different today. Kids really don't see ethnicity like my generation did.
Kids don't see gay lifestyles the same way we did. I think they're exposed to role models who allow them to see different people in a respectful way.

God I hope acceptance continues down the line. Please let my child find a comfortable place in life where others can see his value.

God please!!!