Monday, November 9, 2009

helpless and hopeless

I imagine that there is a time in every parent's life where they feel hopeless and helpless when they have a child with disabilities.

Our oldest is high functioning, but only in some ways. Her asperger-y, black and white thinking has put her in a strange position...wanting to find love and romance, but without the social skills and understanding that most teenagers, however primal, have acquired.

Enter the internet.

There are entirely too many wierdos out there. Potentially dangerous ones. Don't believe me? Check out and plug in your zipcode. Bet you pull up a list. And these are the registered ones. No accounting for the ones who have gone undetected or failed to register.

These creeps, ranging from the mentally ill, quasi-harmless types, that you would prefer your children to NOT hook up with, to the really deranged violent type who would toss your child into the nearest receptacle with the same amount of care and concern as tossing a used tissue.

High functioning kids on the spectrum are so susceptible to these creeps, who present themselves as loving, nurturing, sweethearts. They crave the love, romance and attention that they don't get from the opposite sex in real life...a need that a parent can't fill.

Despite my best efforts, our oldest has fallen into this trap...of a man who trolled cartoon chatrooms looking for such a girl. He tells her she's hot, beautiful, gorgeous, smart, and he wants to marry her.

She's planning the rest of her life around this and cannot be dissuaded by her family, therapists, school resource officers, the police. We who have spent our lives providing for, protecting, and loving her, have become the enemies who keep her "locked in a cage."

She can't believe that anyone who tells her such wonderful things can be bad. Black and white aspie thinking at it's worst. And our worst nightmare.

She'll be 18 soon, and there will be nothing we can do legally to stop her. I can only pray she survives the experience intact.

Thursday, October 15, 2009

off the island

It has been some time since I've updated.
I would love to say that it is simply because I am too busy with school, which is partially true.

The real reason is that I have been heartbroken, depressed, angry, sad and just altogether worn out. Feeling more isolated than ever with having an almost "adult" child on the spectrum with severe difficulties. She's not doing well, and help is very limited.

Is there anyone else out there dealing with this????

Wednesday, September 9, 2009

school daze

Today was a momentous occasion. The "baby" of the family started school. He woke up at 3am, wondering if it was time to get ready...

Yes, my little man started Kindergarten. No tears or apron string clinging for him. He bravely charged onto that big yellow bus with his big brother this morning with no fear, no reservations, trusting his big brother would get him where he needed to go.

He knew what he wanted, and was ready to go for it! He even loved sitting at the dining room table with Daddy to do his homework!

Kelsey began at her new school in her new higher functioning autistic class. She was up at dawn and very excited, and was very happy this afternoon. She didn't have a lot to say, but the smiles spoke volumes.

Cody had some reservations about getting up this morning and dreads the amount of homework coming.

Is age 10 where we lose that passion for learning, and for new experiences?
What is the deciding factor between learning being fun and exciting vs dull and tedious?
Is it the teaching method? Is it the subject matter? Is it the lack of nap time?

Inquiring minds want to know...meantime, I'll begrudgingly go back to my algebra homework.

Saturday, August 29, 2009

calgon isn't doing it

So, in the last 6 weeks, my washing machine, fridge, dishwasher, garbage disposal, kitchen sink faucet and lower level bathroom sink have malfunctioned and the medicine cabinet in the upstairs is hanging by 1 hinge. We've had the fridge replaced, and the lawnmower repaired, but the rest will have to wait until more money comes in, after we've paid our school tax bill.

Due to the washing machine's untimely demise, we moved it to let out the water, and part of the floor came up. This led to the removal of 1 layer of carpet, 1 layer of linoleum beneath the carpet, 1 layer of peel and stick tile, and chipping away at the tile beneath that. Chipping away has become my hobby. Everyday, I spend at least a few minutes getting some of this hideousness away. I have a dime sized piece of flesh missing from my palm (owie!) from being overly zealous in trying to get too much done at once. Now I need to go at it a little slower until this heals.

This seems to be my theme the last couple of weeks...chipping away.

I am constantly worried and stressed about kids, their needs, their therapies, school (for all of us), this money pit of a house and what it needs, but in all reality, like my laundry room floor, and wanting to accomplish everything NOW!

but...there is only so much I can get done in one day without doing myself harm.

I am chipping away at all aspects of life, and eventually I will get where I want to be, and help the rest of our family do the same.

Now, if I can just do it without owies...

Friday, August 14, 2009

back to school

This summer has been one of being surrounded by my kids. I keep hearing from others that I am going to miss this...but as the four of them are whining "mooooom" and looking for me to entertain them, and fighting over who gets the most game time, I am not so sure.

That being said, I can't help but have a little anxiety about the new school year. With the exception of Basil, we will ALL be going back to school in September. For me, it's for the first time in almost 8 years. For Kelsey and Brandon, it will be brand new schools.

Kelsey has moved because she will be in a higher functioning classroom. I couldn't be happier, except we're losing Mrs. Charles. Joyce was more than a teacher. Her dedication to her students is amazing, and Kelsey is a product of that. And she gets to move ahead into Mrs. Kupo's class, who she met in ESY this summer. Kelsey is happy & so am I.

Brandon begins Kindergarten. My baby is finally off to school and Brandon will be joining his big brother on the big yellow bus. Can't believe my mornings of snuggling in PJ's with him after the "bigs" have left for school, are over.

Serena wisely opted to delay her graduation by one year to retake some math and work on Cisco I & II. No sense in failing her college placement tests and having to take (and pay for) remedial math there, when we pay school taxes already. Why pay twice? Thank goodness for IEP's, and the fact that students with them can stay until 21 if necessary. Still waiting for her new schedule to arrive.

I am having a certain amount of anxiety over how I'll be able to take care of everything I need to do for my family, including extracurricular activities for the kids (ballet, music & art) and keep up with a family's worth of academics. 5 out of 6 of us are going to have homework. Some of us will have more than others....
Plus the cooking, cleaning, laundry at the laundromat until we get a new washer, etc.
Add the therapy appointments, and sessions with the behavioral specialist and TSS.

This is going to be an interesting school year. If you happen to see a dazed and glazed woman wandering around looking clueless...yup, it's me.

Saturday, August 1, 2009

Another exciting day at the community pool

I have often thought it would be neat to have a blog. But then, would think..."how narcissistic!"
Who would possibly want to read about my day to day life? Maybe no one will. Maybe someday my kids will, and realize why Mom was so nuts.

Today was a day that made me change my mind about writing "out loud" where the public, or anyone else for that matter could see my thoughts. I imagine this is what coming out of the closet feels like...but here goes:

One of the therapists for our girls funded a pool membership for the family this summer, thinking it would be a good therapeutic outlet. We love to swim, Basil being the exception, unless the water is bathwater temperature. The therapists however have not been in the audience to see Kelsey's annual freak out to the water, but even she loves it once she gets past the first swim of the season. As she gains in skills, I keep thinking that this will be the last year this occurs.

I am wrong every year.

Every year, to date, Kelsey has an hour long temper tantrum screaming meltdown when it is time for a new experience in the pool. It seems like she forgets in the months between September and June, that she KNOWS how to swim. Every year I experience the meltdown including screaming (like someone is killing her) scratching, kicking, clinging. I am pretty sure this is a sensory defensiveness issue, but then it goes away after an hour, only to return next season.

Since we got this out of the way back in June, and she's been fine since, including swims in the rough surf in 60 degree ocean water, I assumed going to a different community pool would be no problem. Well, you know what they say about assuming....

We had yet another meltdown today. We went to a different community pool. Variety is the spice of life, right? Not so for an autistic child. Change from routine is bad. But as the song says "life's about changes, nothing ever stays the same..."(Patti Loveless "how can I help you to say goodbye" Sony records 1993.)

She has to learn how to deal with change or she will not be able to function in this world...

It was a very bad experience. My shoulder is scratched, my head aches, and my ears are still ringing and we managed to alienate ourselves from every man, woman and child as a result of the freak out.

But...I had a visitor to the island today...appropriately, a lifeguard. She asked if we were OK. I had to explain to her that yes, Kelsey is autistic and is sensory defensive and needs to get acclimated to everyday life experiences because she cannot live in a bubble. I feel a strong need to work through this behavior since we (her parents) will not always be here. If her non affected siblings decide to take her in, in the event of our passing, I cannot imagine them having to deal with these same issues when she is an adult. Not to mention, that I am not about to rob the rest of my kids from swimming, when I know that eventually I can help Kelsey work through this.

Kelsey looks like a typical 7 year old. Autism doesn't have many physical characteristics, if any at all, so when I have to explain to someone why my daughter is completely freaking out, a lot of people give me strange looks, nod their heads and walk away.

I'm not the popular mom that everyone talks to, whose kids are admired by others for their diving, swimming, handstands underwater. I am the bad mom who can't control their child's temper tantrum. They don't understand autism when they see it.

Kelsey did calm down and stand in the water. Eventually, she was even able to tell me that she couldn't beat to stand on the black "T"s in the water (the lines painted on the floor of the pool for swimmers to follow while doing laps) which is a very autistic thing to do. Once that was established, she walked on the blue sections, and swam over the "T"s, and had a lovely time. The young lady lifeguard and I shared a "thumbs up" from across the pool. All was well....

Except we were still the pariahs of the pool.

Makes me think of the "Scarlet Letter" and how maybe if I actually wore a scarlet A (for autism) that maybe we wouldn't be much perhaps. At least maybe someone would be able to identify who we are and what we are dealing with.

On the way out, I shared Kelsey's thought process with the lifeguard, regarding the "Black T's," feeling like I should explain what had set Kelsey off since I finally had a clue.

She shared with me that another mother had asked her to have us leave the pool. Fortunately for me, this lifeguard has a young cousin with autism, so as soon as I told her about Kelsey, while I was struggling with her in the water, she understood. Had it been another guard, I might not have been so lucky. At least we had one visitor to the island today, who speaks the native tongue and understands the customs.

All hail the female lifeguard with the short blonde hair at Pembryn Pool. Welcome to the island.