Who me?

THESE MOMS SHARE SPECIAL GIFTS

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecelia. Rudledge, Carrie, twins, patron saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious, "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy."

"But, Lord, I don't think that she even believes in you."

God smiles, "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods, "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says Momma for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, pen poised in midair.

God smiles, "A mirror will suffice."

what should have been

Tuesday "should have been" a really big day in my house. The day that so many parents look forward to and dread all at the same time.
Ben had his first day of Kindergarden.
The thing is... Ben's been being picked up to go to school for two years now. So... it really wasn't that monumentel event I wish it had been.
Brent and I should have had him dressed to the nines (which we did), hair brushed (which we did) and delivered him to the school for the big walk up to the door.
We didn't.. I didn't even take the morning off. Why? That would be too upsetting to Ben. He's used to getting on the bus, but when I'm home, in his mind, it should be a day off. Why would I be home and not him? Days that I am off (few and far between), I pretend to leave and hide in the bedroom until he leaves for school.
So..... The big special day, was just another autismic day.
Brent and I tried to prepare him as best we could. We made several trips to the school to show him what it looked like. Spoke that Barcley was no longer his school.. played on the playground, crashed the door one day in August and recieved a 5 minute tour from the principal, and made an appointment with his teacher to meet her and the new room last week prior to the start.
We seriously try.
Ben's first day was pretty good. The teacher reported that although he did not want to get off the bus, she was able to coax him eventually, and he gave her a hug, took her hand, and walked off to her room. It was reported he had a happy day these first two days. Thank God!
Ben has also started another new program. The SACC program which is the school based after-care program. Our daycare cost should go from 800 per month to 229 per month. SWEET!
Only one little issue. Have I mentioned Ben has regressed with potty training. He is now averaging about 6 accidents per day. He's not even making an effort to go to the bathroom. WTF!!!! Seriously? Can't something just go right?
The after-care program said they would change him. just between you and me? My biggest fear? He'll whip out his stuff on the playground and just pee right there in the mulch. and then guess what? He's outtttaaaaa thereeeeee! Keep a good thought!
Our school district is off for the next two days (jewish holidays) so... Ben get's two days of school, get's used to it... and then off to daycare for two days. My head's spinning, my guess is his too.
Also the issue of communication....
Friday, I'll be picking Ben up about 2 and heading to the beach. We'll stay until Sunday building sandcastles, swimming, going on rides, eating pizza and icecread..... weeeeeeeee. oh pardon me, I just got excited. Hopefully Ben will be too!!!!!!

it's a friggin see-saw

Life.... phhtttttt

I swear life is a constant see-saw. you're up...your down...
When I'm up, it's like out of one of those B-movies.... the blue sky, the sun shining, and rose petals falling from the sky... what a ride
When I'm down... there you are, on the ground, staring up at everyone around you.
I know I'm not alone on this ride. The see-saws are lined up for miles with every imaginable person riding. But you CAN'T get off. Even when you think you're going to puke... STUCK.
We practice balancing. of course the fact that there's more then one other person rocking your boat doesn't matter. you spread everyone out, and hope no one jumps off (I always hated that kid), or falls off..... but they do.
I picked Ben up from day-care on Friday and one of the young aids is speaking of how wonderful he is, putting words into catagories. he's soo cute, etc. I leave there thinking that Ben truly is an ambasador to autisim. He's introduced autisim to several people who hadn't known someone with it previously. It made me proud of him.
Ben's communication had really ramped up well. Speaking of how he's started to catagorize, he started with transporation. I was playing around with him and started with Nick jr shows. I mentioned a few, to get the idea going, and he threw in several. Oswald, backyardigans, and one other. Shows he fully understands what I'm doing and enjoyed participating. We did it with colors also. Great!
We went swimming on Thursday and an hour in looked at me "get hamburger.. go home". OK I can deal with that.
Now when the ride goes down... BILLS!!! I f*ck*n hate them. My husband has a unique way of deciding which bill to pay. Cable yes... car payment.. they can wait... AHHHH!!!!!!
We went to open arms on Sunday at the discovery museaum. It's nice... but.... it can bring me down. There are the children doing well. I can't tell. (and I'm always watching) and others who are so obvious. Where will Ben fall,,,, What improvements.... I'm tired!!! and that's without even doing anything.
PMS is a bitch... and today... so am I

Jack the Ripper strikes again

Funny? Not Funny? Definitely not funny...
My son, the last month, has taken on the persona of Jack the Ripper. (sorta). He will be sitting playing with something... stand up... walk over to some unsuspecting child and begin scratching their necks or strangling them. Isn't that sooo special.
It has happened at school and daycare. It's a completely unprevoked action. Don't get it.
I spoke with Ben's special ed teacher and she feels that this is a sensory seeking activity. Great...
The children already do look at him oddly.. (their 3). Parents always give me that extra special smile... so nice...let's see how long that lasts when their kids running screaming from mine.
Isn't it bad enough he has to be pretty non-verbal with the exception of noises. shake his hands, etc... babble.... but now they can have real reason to fear him. The child yesterday started yelling he's strangling me. LORD!!!! I need this to stop!!!!
The nightmare of your child being friendless, regardless of the fact he has no use for other children, and you know it's your own pipedream, that he'd want nothing to do with... and now another hurdle/obstacle/barrier/bitch....
The manager of the dadcare took ben to her office and sternly explained that this was not allowed. When I came to pick Ben up she started talking to him again. He turned to me and whispered( not so quietly) "spooky!". Yeah.... I can see it.
I tried denying his afternoon cookie for such poor behavior.. but the tears the cries....I suck!
Here's hoping today is a better day.
P.S - just got a call from Ben's school. He's now taken to escaping the booster seat on the school bus, and they'll be using a harness to restrain him.... goood times... good times.....

That's it?

I would tell you that everyday is busy..... I find "something" to yap about constantly... and yet.. when I think about what to write down, I'm blank. Completely.
I read several blogs and everything written I relate to. Whether it's a current state, or a nightmare I only let myself think about briefly. All the blogs relate.

14 of us went camping. Ben is very good about going on vacations. My mother (you know the world renound disbeliever) thinks that this is a wonderful sign. Don't you know ALL autistic children have issues with change. This alone can ensure her that he will snap out of it one day.

Well prior to going camping we do spend time talking to ben. we're going camping, we'll sleep in the tent, we'll go to the rides, etc. We show him pictures from last year, and I have no doubt whatsoever that he is very aware of what we're doing. Funny thing is, it takes FOREVER to pack the car for these trips. We bring ALOT of stuff. As soon as Brent went out to pack, Ben jumped in his seat and refused to get out. good enough.
We get packed, on the road, eat lunch, and when we get there, he jumps from the car to hit the creek. I let him sit beside the creek while Brent and I set up. Anyone who camps knows this is an extended activitiy. Add the fact it starts to POUR and there's us running around, and Ben still sitting beside/in the creek. good times good times.
After getting set up and the sun returning, we went to have dinner and some rides at the park. we go to Knoebels Park in Ellysburg PA. I hope very few people read this blog, because I love the place and consider it to be somewhat of a well kept seceret.....
We put Ben on his first ride of the night and trip... the whip... where he was the only child on, and proceeded to try to climb out while it's moving. BAM!!!! right there is our different world. I hate it! We walk thru the park watching 2 year olds exitedly run to the next ride, chatting and smiling, and there's ben.... not....
After that, aside from the moonbounce, I'm not letting him go on anything by himself. We stand out. People know. Adults know. Children know. I hate it.
There are some crusty people who work at Knoebels. I remember the woman from the moonbounce as the same as last year. She was just as crusty. There were no crowds, no lines, no waiting. When Ben's turn was over, I handed her tickets and said he'd like another turn. She began insisting that he come out. Brent starts backing up at this point. I questioned the rationale of making him get out just to go back in. Her answer was "he has to learn". Thanks. I prepared myself to go in to get him, when some lightbulb must have gone off and she let him stay. whatever.
Ben then went in a HUGE pool of balls. The older woman attendent asked me if he was disabled. Just like that.... what? no dinner first?
I then realized there's no making me happy. If you don't see his special needs, I'm annoyed. If you do see his special needs I'm annoyed.
I think I just hate it.
The trip was a success though. Crystal Pool, limited rides, and hours in the small creek. Ben slept each night soundly, and the food and company was excellent.
I think I need a vacation....

hey there!

Well.... I'd love to talk about how busy and exciting life has been... but that would be b*llsh*t.
There has been some noteworthy events:
Ben graduated from pre-school. There was a cute little ceremony where they stood on a box and the room clapped for them. My mother, grandmother and 21yr old went to enjoy the festivities. Too cute!
Brent and I went to visit Bens kindergarden.
That was a positive experience. We learned plenty, or at least I did.
Ben could possible be in this classroom for 3yrs. He could then go to the next class 3rd-5th. I like that. teachers/aides will really get to know them. Talk about positive people. They spoke of the kids who had come in completely non-verbal who are now in main-streamed classes. They practically promised us that wait and see... you won't believe the change you're going to see. How often do you hear that? People ready to kick it into high gear instead of worrying about covering their butts.
It was almost a little hard to hear. Don't dissapoint me. I can handle not knowing, but this build up was pretty big.
Ben will be 5 in July. Up until last night he was still in his crib. We just never took him out, and he never seemed to want to get out. We went IKEA and bought him a bed. while I gave him a bath, his father took down the crib and set up the bed frame. He was so cute when he went in his room. He gets such a smug little look on his face. We asked if he'd like to sleep in a big boy bed.. typical reply "ok". He waited patiently while it was put together and sheets put on... then in he went.
Up until last night, we had a security knob on his bedroom door. The kind that just spins unless you hold it right. I took it off. If he wants to come out and use the bathroom etc.... blah blah blah.
Well...... 9:30 we put him to bed "asleep". We came downstairs, and while I let the dog out, my husband putzed around. He rounds the bend from the den to the living room, and who'd sitting on the couch. You can sympathize that even the face of an angel when unexpected can be like a little demond! LOL Scared the crap out of him. We watched a little more tv, then he fell asleep and I carried him up again... until 2am when he decided to grace our presnece again.
I'll try this new found freedom for about 2 more nights... then lock his ass up again!
(I mean that in the nicest of way!) (We still do use the monitor)

reality bites

Ben has been placed for Kindergarden. He is one of two kids in his class who are going to a self-contiained class. All the others are going to language support, or a less restrictive class.
Think that doesn't bite? It does. I found this out when I went for the mother's day tea. Mother's were discussing which school their kids were going to, etc.
Such a bummer!
I will say that Ben's receptive language is perfect. He does know and process everything we say to him. He's able to communicate most of his needs (one-four word sentences) and has recently started singing. His two songs du jour... For the holidays.... two names say it all (Raymoore and Flannigan commercial) and the wheels on the bus. It is adorable, and he's really trying to sound good. (he has his mother's pitch.... ewwwww)
Other then that.. we're in full summer mode. We were swimming twice this weekend, went to a fair, and life for Ben couldn't seem better. Of course he's become a pool snob. He only wants to go to the YMCA or to his aunt's pool. We fill up his little blow up pool, and he says no pool... no outside. The kid suddenly doesn't want to go outside??? WTH? Brent and I are total outdoor people.
We took down a bush/tree this weekend, and while we're tying it up I bought out cars, etc for Ben to play with. He sat in Brent's truck. dud!!!
The one GREAT thing we're looking forward to is getting Ben into the school districts after-care program in Sept. It will cost us 230.00 a month opposed to 800.00. Of course that money will be chewed up and spit out god know's where... but almost 600 extra bucks a month!!! SWEET!