Monday, June 12, 2017

I'm BAAAAAAACK........

Ok, it's been YEARS since I posted anything to this blog. After my dip into borderline crazed psycho b*tchland that my last blog turned into I've honestly been afraid to post anything. (And don't bother looking for that other blog, that sucker is dead and gone.)

I was talking with a friend today, and told her about how I used to write, and I realized how much I've missed it. So - while I'm formulating some ideas I thought I'd share an older posting. At the time I wrote this I was in college for my BSN and ran up against some astonishing stupidity from a professor I had.


Autism, ignorance and stupidity.

I had a very interesting, although upsetting conversation last year with one of my professors. I had stopped in to see my Chem lab instructor, and in the course of talking she asked how my son was. She knows Wy's autistic, and we've had conversations about autism before, but never one like this. She was asking about his schooling, what kind of class does he go to, is he in a special school, all that. I told her he attends a specialized autism class in a regular elementary school, that he goes to a regular classroom for math, science and specials (music, art, gym,ect.) and that the kids eat in the cafeteria every day. She looked shocked. She told me that it was a bad idea for him to go to a regular school, that "children like him" should be in a school for kids with disabilities, and not around "normal kids". She said that it's not good for "normal kids" to be around "damaged" children, that it will make them "act like they're damaged too". (anything in quotations is a direct quote from her).

I was disgusted. This level of ignorance and prejudice, from someone with a PhD?!?! I was stunned. So much so that initially, I didn't know what to say.

Once I pulled my thoughts together I politely explained to her that Wyatt was not "damaged" his intelligence is intact, he's able to communicate, and he's doing very well in school. I then made an excuse and left. Had she been anyone else, I would have ripped her a new one, but since I still needed a passing grade from this cow I had to bite my tongue.

Later that evening I talked to my older son. One of the sororities on his campus was doing a lecture on autism so he decided to go, thinking he might learn something new. Sadly, no.

The lecture consisted of all the standard stereotypes about autism. Autistics can't express feelings, they all rock and handflap, they're not able to communicate, they don't make eye contact and autism is caused by vaccinations. Autistic children (And of course, ALL autistics are children) are victims, helpless, unaware of the world around them, incapable of showing affection, learning, or experiencing joy. When the girls presenting the lecture threw it open to questions, my son proceeded to dismantle nearly every point they had presented. He asked them if any of them knew someone with autism, and not one of them did.

He told me not one of the girls from that sorority will talk to him now. He said it's no great loss! God I love that kid.

I'm just so sick and tired of the media presenting autism as this horrible "disease" and "epidemic" that NEEDS TO BE CURED!!!!! MY GOD WE HAVE TO SAVE THESE POOR SAD LOST CHILDREN!!!!

Please, shut up.

My son is not lost, he's not a victim and he's actually a very happy kid. He knows that he's different, but he also knows that he's loved and accepted for exactly who he is. There have been times when I've told people he's autistic, and they respond with "Oh the poor thing" Oh bless his little heart" Oh that's so sad".


I don't tell people he's autistic so he'll be pitied, I do it so he'll be accepted, so people will understand that he's he's not a brat, he's not hyper and he doesn't "need a spanking". I tell people so they'll understand that there's a reason he responds to questions with quotes from movies, so they'll know that he can't always make eye contact because it's too overwhelming for him. I do it so people will learn, so they'll see that autism is not the end of the world, it's just a different way of experiencing it.

Despite all the sobbing mothers paraded out by Oprah and Autism Speaks, not every parent of an autistic child is sitting at home thinking their life is a living hell. Unlike Jenny McCarthy, not all of us are subjecting our children to experimental treatments, restrictive diets, psychotropic medication and intensive, sometimes torturous therapies in the hopes that they'll become "normal", that they'll be "cured". Many of us are doing everything we can to help our children learn and function, WITHOUT trying to change who they are, or trying to force their square brain into the round hole of neurotypical function.

Many of us love our autistic children exactly as they are.

So get over it already.

Thursday, April 12, 2012

Can I trade this past week in for a box of cookies?

Because I think I deserve a box of cookies.

A REALLY big box of cookies.

And I'm not talking Chips A Hoy's here, I want the really good ones, with fudge and peppermint, that come in crinkly paper bags with fancy little paper cups, the kind that just scream "Oh I'm really expensive, so you should drink me with a cup of flavored coffee with real cream in it".

You know - THOSE kind of cookies.

It's been that kind of week.

The majority of you intrepid folks who follow my little blog know that my grandmother passed away this past week. Gram and I always had a challenging relationship when we were younger, she had favorites among her grandkids, and she was never very subtle about it. When your grandmother walks up to you on your wedding day, and the first thing she says is "Where's my Tracy?" you get a pretty good idea of where you stand with her. But the woman who said that to me, the woman who I butted heads with as a kid, disappeared a long time ago.

The woman that she became was tiny, and fragile and confused, and seeing her change like that, seeing what time and life had done made any resentment I had disappear a long time ago. I know that she appreciated me being there when Grandpa died. I know that she loved me, that she respected my intelligence, that she trusted me to be there for her if she needed anything. And so, when her body finally started shutting down, I stayed with her. I sat next to her, kissed her cheek, held her hand, and told her it was ok for her to go. That Grandpa, her parents, her sister and brother, her cousins, all the people she loved were waiting for her, and that we'd miss her, but we'd be ok.

I was there with her when the Hospice nurse came in to see her, and the two of us gave her a bath and changed her gown. I washed and dried her, and put lotion on her skin just like she'd done for me as a baby. I was there with her when her breathing changed, when her color changed, and I knew she was going. I leaned over and whispered to her that I loved her, that my parents, my sisters and brother, my cousins, and all our kids loved her. I wanted her to know that someone was there with her, I wanted the last thing she heard to be that she was loved.

And it was.

As soon as I was done telling her, her breathing stopped. Her face relaxed, she looked peaceful and calm, and I knew she was gone. I borrowed a stethoscope from the Med Tech, and just like I did with my grandfather, I put it to her chest, and listened for a full minute, and then asked them to call Hospice so the nurse could come out and pronounce her.

The next couple of hours were a blur of phone calls, gathering up her personal things, thanking the staff for taking such good care of her, honestly I really don't remember all of it, I was on auto-pilot at that point. I think the next thing I really clearly remember was talking to my friend Tom on the phone as I was headed over to my brothers house. I spent a few hours over at Joes, just talking, eating, drinking a couple of beers, enjoying my niece, and laughing with Joe and Nena as we swapped stories about Gram. That time with family was exactly what I needed, my brother is one very funny guy, and the stories we shared had us both gasping for air from laughing.

So there's that.

Today Wyatts father and I went in for yet ANOTHER IEP meeting. We've both been pretty frustrated with the school, there's a serious lack of communication on their part when it comes to any academic difficulty Wy's having. We've both repeatedly asked that we be updated on a regular basis, so that we can start addressing issues before they get to the point of affecting his grades, and that just hasn't happened.

I think part of the problem is (and this has been an ongoing issue ever since Wy started school), that Wyatt is a very pleasant child. He's sweet tempered, very polite, and really lovable. Since he's not a behavior problem teachers are not quite as on top of him as he needs them to be. I think the other problem is that because Wy was doing so well last year, we may have pushed for more mainstreaming than he's ready to handle yet. Transitioning from elementary to middle school is tough for typically developing kids, and even more so for one on the Autism Spectrum. It's a HUGE change, and adding the change in the custody situation on top of it may have been asking a little too much of Wy.

So, we're dialing things back a little. He'll still go to the regular Language Arts and Social Studies classes, but we're switching him to a resource class for math and science. John and I have not been at all impressed with his science teacher, he's never once responded to an e-mail or returned a phone call, and he ducks John every time he tries to talk to him, so I'm just as happy to have him out of that class. The math teacher has been great with him, but her class moves at a pace that's just faster than what Wy can keep up with.

I've also been asked by the Special Ed teacher to come in and do a workshop for the teaching staff on how best to work with kids with autism. I'll be putting that together over the next few days, and I'm really looking forward to doing it. Between that, and the workshop on Palliative care that I'll be doing for a group of EMT's I'm developing a nice little side gig as an "Expert" speaker!

So there's that.

And I think I've earned that big box of cookies.

Tuesday, March 27, 2012

Autism Mom is out for blood again.

Just in case the title wasn't a clear enough hint, I'm more than a little livid right now.

I just got a phone call from the Special Ed Case Manager at Wyatts school. In spite of the fact that his father and I have already had 3 (THREE) IEP meetings this school year (2 of them to address the fact that appropriate supports were not in place in the classroom for Wy), his grades have started slipping again, and his teachers have asked for a meeting.

Now - ALL of his teachers have my e-mail and phone number, and Wyatts father talks to his classroom teachers when he picks Wy up from school on his weeks. Neither one of us has had any notification that he wasn't doing well.

None, nada, bupkus.

I just checked the school website, and from what I can see, the thing that's bringing his grades down is not homework, it's class work.

That's right, the work he does in the classroom, with a teacher, and an aide that's assigned to him right there. The teaching assistant that's supposed to be helping him take notes for science hasn't been going every day, despite the fact that his IEP says that's what he's supposed to have. The same thing is happening with Language Arts. Classroom work isn't getting finished, even though he is supposed to have someone working with him in each class. How does work not get finished when there's an aide sitting RIGHT NEXT TO HIM?! It's not the homework that's dropping the grades, his father and I make sure that gets done, it's what's going on in the classroom.

After the last round of IEP meetings, when we finally got the supports in place and followed, he brought home a report card full of A's and B's. The only bad grade he had was in science, and that, we later found out, was because the school had not been sending an aide to the class with him, he'd been left on his own. The other piece of info that came to light was the fact that of all of his core subject teachers, only 1 had any experience working with autistic children.

I had actually offered to come to the school, and do a workshop with his teachers, to help them understand what his being autistic means in terms of his educational needs. I was told "Oh yes, please, that would be fantastic!" Never heard another word from the school about it.

The only one of his teachers that's actually contacted me is the Special Ed teacher he goes to for 1 period a day. She just called a minute ago, after getting an e-mail telling her about the meeting request from his classroom teachers. She's just as upset as I am - Wy has an A in her class. She said she looked over the same info I did, and came to the same conclusion - the problem is in the classroom, and there's no excuse for it. We talked about the possibility of maybe cutting back on some of the inclusion programing, to give Wy some time to catch up, which is an option, but for me the bottom line is that whatever is going on, or not going on in the classroom needs to be fixed.

Wyatt and I have worked SO hard to get him to the point of full inclusion. He's more than capable of doing the work, and he loves being in the regular classrooms. He's made friends, he comes home smiling every day. I hate the thought of having to drop back on that, and having him feel like he's failed in some way when the reality is that the school is failing him by not meeting his needs. It frustrates the hell out of me.

The hard part (and I've been saying this for years), is that BECAUSE he's so high functioning it's easy for people to forget that he is still autistic. He still has sensory input and processing issues, he still can either listen to the teacher or look at her, but not both at the same time, he still hears background noise at the same volume as what he's supposed to be focusing on, and if a train goes past the school forget it, you've lost him.

I've had some ugly IEP meetings in the past (Ramona knows, she was there for a few of them!), and this time I'm going in armed for bear.

Saturday, March 17, 2012

My not so sporty boy

I've been wanting to get Wyatt enrolled in some kind of team sport for a while now, for several reasons - First, I think it would be really good for him socially to learn to work as part of a team. His natural inclination is to play next to other kids rather than with them. I know that this is part of the autism, but I also know that there's a point coming (very soon) where the social give and take is going to crucial to him developing lasting friendships. Second, he's a little bit of a klutz. He comes by it honestly, I can't ever remember a time where I didn't have at least 1 bruise on me. Third, I think it would be a great confidence booster for him, and with the specter of adolescence rearing its pimply, greasy haired, body odor laden head I want to give him as much self confidence as possible before other kids start picking away at it.

He's in the after school program at the YMCA, and the director of the program - a fantastic guy names Shawn - has been taking the kids outside and having them play touch football. Shawn is just great with Wyatt, he's patient and accepting, but he doesn't let him off the hook. He treats Wy just like the other kids and has the same expectations for him, which is exactly what Wyatt needs. So when Shawn told me he thought Wy should sign up for the flag football team I decided to give it a shot.

We've tried the team sport thing before, a couple of years ago, and it was a dismal failure. The soccer coach had no patients for Wy and she kept trying to turf him off to another team. After 3 practices with my kid sitting on the sidelines, or being sent across the field to a different coach and ending up in tears I finally pulled him out.

But I figured he's older now, more mature, and so we'll give this a shot. Today was his first practice, and when I say my kids NOT an athlete I really can't stress that enough!

The coach had the boys line up and had them start running drills around some cones - Wyatt ran the cones in full autistic glory - hands flapping, and making train noises at the top of his lungs. I damn near wet my pants laughing! Then he had the kids throwing and catching the ball.

Wy throws a football the same way he bowls - overhand with both hands and yelling HARGH as he releases the ball - the poor kid trying to catch it looked terrified for a second or 2. He catches a ball kind of like his mother does - head turned to the side and eyes closed as if bracing for impact.

Now I know how my father felt as he sat through softball practice with me. It's this odd mixture of bemusement and shame, with a little dash of horror mixed in.

At one point Wy asked the coach if he could go sit down because (and these are his exact words) "We're doing something that's new to me, and I get a little anxious when I try something new, so I have to go sit down now"

Yeah, he's autistic, but he knows how to play it up too!

Wy came walking over to me and sat down, I gave him a drink of water and sent his little butt right back into practice! He tried to argue, saying he wanted to go home, he had a very important meeting to attend (Yep, that's straight out of a Sponge Bob episode), and I told him "NO. You are no different than any other kid on your team, they're practicing, you get your butt back over there and practice too."

I refuse to let him use his autism as an excuse to not participate to the fullest level that he's capable of. He may have to work harder than the other kids to stay focused, but I know he can do it, and I won't lower the bar out of pity or guilt.

I made him march his little fanny right back out on the field and stay there for the rest of the practice, and I'm glad I did, because the next time the coach had them run a play, he made Wyatt run, and Wy actually caught the ball!

He was so proud of himself for doing it,the kids on the team patted him on the back, and I'm so glad I stuck to my guns. Now he said he's actually looking forward to practice and the game next week, and so am I.

Saturday, February 11, 2012

Pegalish's advice for the lovelorn

Hello my dearies.

Online dating is quite the little adventure, full of potential pitfalls for you poor lonely men out there. Since I have a giving nature, I've decided to share my advice for all you love seeking little Y chromosomal types. (Well, not just for you, Lyn missed a few of these, and my parents aren't on Facebook, but they do read my blog with great enthusiasm, and the occasional cringe)

Take it in boys, live it, learn it, and invite me to the wedding. Just don't expect a gift, this is it.

Pegs Online Dating Tips:
Online dating tip #1 - it's never a good idea to use the word Creeper as part of your dating handle.

Online dating tip #2 - if you're 47 and say you're looking for a woman between 18-58, you're more than a little creepy. That being said, when choosing an online dating handle, feel free to ignore tip #1.

Online dating tip #3 - posting a picture of yourself balancing 2 beer cans in 1 hand while you smoke a cigarette with the other is probably not going to attract the "Good Christian Woman" your headline says you're so desperately seeking.

Online dating tip #4 - if you go on a date with a woman and YOU are the one who says you'd like to see her again, disappearing off the radar for the next 2 days is NOT the way to let her know you're interested!

Online dating tip #5 - Telling a nurse that you needed to call 911 after looking at her picture will immediately make her start imagining any one of a myriad of cardiovascular disorder you could be suffering from. Not a turn on.

Online dating tip #6 - If she hasn't responded to the first 5 messages you sent her, sending a 6th one telling her about your house, vehicles, and a rough estimate of your adjusted gross income probably won't get a response either. If it does, is she really the kind of woman you want?

Online dating tip #7 - Don't say you're looking for a "good woman". Every man out there is looking for a good woman. Be a little creative - say you're looking for a bowlegged ex con with a glass eye. Narrow down your playing field a little.

Online dating tip #8 - don't say you're a musician if you're not. The picture of you holding your guitar upside down is a dead giveaway.

Online dating tip #9 - For the love of God DO NOT quote the Pina Colada song! Listen to the lyrics, the man is reading the personals in bed, looking to cheat on his partner!

Online dating tip # 10 - One word - PICTURE!

Sunday, February 5, 2012

The art of online dating negotiations

If you read my last post (and of course you did, I have a small but loyal following and I love you all for that), you're aware that I've plunged into the online dating pool, which would benefit greatly from a few lifeguards and a generous dose of chlorine.

It's been an interesting experience to say the very least. Good GOD there's a LOT of scary single men out there! I was checking my e-mail today, and got a notice that I'd received a new message, so, curious girl that i am, I checked it.

And here it is: "After looking at many profiles here. I have surmised that you would make the perfect girlfriend for me. When are you available to start a relationship? Please get back to me quickly. We must take advantage of this glorious opportunity as quickly as possible."

I've been puzzling over how one should respond to such a message, and I think I've finally formulated a suitable answer:

Dear __________:

Thank you kindly for your interest in my profile. I'm honored to know that I've managed to meet the exacting standards set by a gentleman of the caliber found on a free online dating site.

Before I can agree to seize this "glorious opportunity" I'm afraid I'll need a bit of clarification of the terms under which I'd be entering into an agreement.

1) Your use of the term relationship is a bit vague, would this be a mutually exclusive partnership, or would I be free to entertain counter offers? Should the opportunity to freelance present itself would I be prevented from doing so by a monogamy agreement of some sort? Would you be willing to be bound by the same terms?

2) The term "perfect girlfriend" is also in need of some refinement. My definition of the "perfect boyfriend" is as follows: 4 star chef with a masters degree in special education and a deep abiding (but not creepy) love of children with autism, possessed of housecleaning talents that would make Martha Stewart orgasm, the ability to say my thighs look like a 17 year olds (without the slightest trace of irony), and able to turn into a cheeseburger and chocolate malted after mind blowing sex (without asking me to make him a sandwich first). I'm sure you have similar such expectations of the "perfect girlfriend", you'll need to be able to clearly define those expectations for me.

3) What specifically do you mean by "glorious opportunity"? The chance to purchase a metal detector at a reduced rate is a glorious opportunity, yet comes with no guarantee that one will stumble across a trove of ancient pirate plunder thereby ensuring complete lifelong financial independence. Are you offering stock options? A 401K? Overtime for doing your laundry? I'm afraid I'll need a bit more information first.

Thank you again for your interest, I look forward to your clarification of terms.

Wednesday, January 18, 2012

Some thoughts on dignity and compassion

I just posted that I had received a very nice compliment today. I had gone to see a patient yesterday, and while I was there our chaplain (who is a truly lovely woman, the epitome of what a Christian should be), and one of our social workers also stopped by for a visit. I did my assessment, set up the pill box for the week, and spent some time talking with the patient and the family about any needs that they had.

When I came in to the office this morning, Anne (the chaplain) told me how impressed she was with how I interacted with the patient, she said I treated them with compassion and dignity, that I was very kind and caring. It meant a great deal to me to hear that from her. It also made me feel a little sad that treating someone with dignity and compassion would be something that needed complimenting.

I've always believed that it doesn't matter where someone comes from, or how they ended up needing my care as a nurse, what matters is where they are right now, in this moment. In this moment, they're a human being who is sick, in pain, frightened, and my job, my duty as a nurse is to relieve their pain, ease their fear, and treat their symptoms.

I've taken care of homeless people, and millionaires, the illiterate and college professors, and I don't care if you live in a palace, or a box on the corner, I treat all of my patients the same.

I treat them like human beings.

When you strip away the possessions, we're all the same.

The focus in working for Hospice is different than it is in other types of nursing. The goal is not to cure, because our patients are not curable. They're dying. My focus as a Hospice nurse is to relieve pain, ease symptoms, and allow my patients to live as fully as they possibly can for as long as they can. I've learned so much from my patients already - about what truly matters most in life, about what is really meaningful, and what is trivial. It's helped reinforce the appreciation I have for how good my life really is.

To treat the people who teach me about what really matters in life with anything less than the best, most compassionate care I can give them is to dishonor the trust they place in me.