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Tuesday, May 31, 2011

Views Of the Disabled Around the World

The following videos are ones I was able to "find" in regards to how those around the world view and are treated that have various disabilities. And personally, the last video is the most profound.






Sunday, May 29, 2011

Inclusion...As it should be.

My child has mental health issues. They do NOT have him, though. He may have his quirks and his ways of viewing the world around him. But when you get down to the brass tacks of it all, he is just your average, ordinary, everyday kid who loves, loves to be loved, plays hard and loves to play with others (most of the time).

Also, we got his SOL (Standards of Learning) scores back from taking them for Reading and Math. He placed Advanced in both. One of them (Reading) was a 2 hour to 2 1/2 hour test. He was able to go to another area to take his test and have as much time as he needed. He felt less stressed and anxiety-ridden, and felt more at ease at knowing that he could just take HIS time and not feel any pressure.

We are now officially out of school for the Summer. But we are getting B in to the Day Treatment Camp. And I already have his new Homeroom teacher lined up for next year. She is the ONLY one of the three in the 5th Grade Unit Special Ed. certified and is already acclimating him to be with her. In fact she started it MONTHS ago, seeing as they are only three doors down from one another. I love H's (now former) teacher!

     (My niece who is going to be a Senior in HS and B at the family reunion)

     (Five...yes, F-I-V-E generations of my husband's late Grandfather's side of the family. 7 kids, 16 grands and 32 great-grands, and 1 great-great grand. NOT all pictured here, but includes spouses/significant others, with my son in very front in red shirt and blue shorts.)

                (B in the school's Field Day race this past Thursday.)

Monday, May 23, 2011

And so he got approved...Sorta.

Finally. I had received the "Pre-Authorization" notice for Bryce to go to Day Treatment Day Camp for the summer. I had practically crawled up his Case Manager's hind end as to know when I was to get the paper work. After several weeks asking about this paperwork to fill out, she FINALLY tells me that Medicaid is "doing things different this year and pre-authing" the clients". Nice! Thanks for telling me after WEEKS of speculation.

So, I get my copy in the mail last week. He got approved alright! For "Mental Health Partial Hospitalization" due to it being "Medically Necessary And Approved as Requested".

Stupid insurance formalities! I am NOT placing my kid in a Psych Ward. He is going to be in a Summer Camp with other kids with problems and disabilities as he too has.

In the Day Treatment Day Camp setting, they not only do fun things like crafts and go to various places. They learn the tools (or are re-taught, if they have "forgotten") to help them have better social and behavioral skills. And they even receive therapy on-site at least once a week. And they learn how to better form and interact in friendships.

Most of these kids don't have any real friends. Why? Because of their "quirks", like being so short tempered, their ability to ramble on about one certain thing, not letting others speak or they get cut off because our kids have yet to master the social cues of when to "talk and when to shut up". Or they have visible tics that scare other kids from interacting with the one affected.

At least at the Day Treatment Day Camp, EVERYONE is equal. There is no shunning. They feel safe and comfortable. And if their "quirks" decide to shine, that's okay. Even the negative ones. But they will get assistance in trying to "deal" with the more negative aspects of the times where being good is just a little bit more hard than most days for them.

But one little hitch is still in the plan. Where in the world is my paperwork to OFFICIALLY place him in to the Summer Camp? I guess I will get to make the lovely call (again!) to ask his ( in new to being one) Case Manager once more about getting the papers to fill out and give permission to be in the Day Treatment setting.

It's only about two weeks away. So they best give me my papers to sign. Or else, if she cannot do her job properly, I will have to report her to Bryce's old CM, who is now in charge of the CM staffing.

And I REALLY hate "tattling" on people, only to get them in to trouble. But by golly! They need to do their job and do it in a TIMELY manner. Yes, there are other kids besides mine that they help and I duly understand this. But I appreciate equal time and concern for my kid as well, along with the other patients.

Wednesday, May 18, 2011

Living Life To It's Fullest...No Matter The Disability.

The year was 1976. It was Christmas time. And it was three weeks prior to my due date. My parents didn't know until my mom was about seven months along that I was even coming in to their lives (she was obese and thought she was gaining more, though she was eating less). At the same time, she also had a tumor that sit next to me in the womb area, making barely any room for me to grow and made it difficult to move (or even breath out the fluids I swallowed).

I came in to the world literally backwards, butt first. As I did, I tore her to the point of her nearly dying from the severe blood loss.

Then it was shown that from my chest wall, I had a collapsed lung and after further inspection, that I had a Tracheal Fistula (my esophagus was basically severed, almost completely).

After stabilization, airlift transport and an eighteen hour surgery, where I "died" four times, I had my lung re-inflated and had the fluid removed. But I was also trached and they had to do the repair along with everything else to my esophagus.

First, it was that I most likely wouldn't live past 24 to 48 hours. Then, the first week. Then the first month. Then six months.

All the while, per the doctors, I would *NEVER* walk independently, talk, feed/drink independently (as in require tube feedings) or have viable pregnancies.

Plus once my parents even fathomed bringing their almost-three-year-old daughter home FOR GOOD in 1980, they were once again met with resistance. They were firmly told that there was NO way that they could sustain me on their own and it was best to place me in an institution to get the level of care THE DOCTORS felt I needed.

Well, I went home with my parents, against Doctor's advice. My in-home nurse was FIRED after the first three weeks of not allowing my own mother to care for HER child in any way. And both my mom and my dad had started me on a path of learning and doing. Walking, talking and eating.

Today, I eat anything I want. And drink anything I want. Of course, thanks to my esophageal tract still being way too narrow and having a "dent", I have at times, trouble swallowing my food without it going the wrong way. Rice and carbonated sodas being the main culprit.

I walk ALL over. Have ran 7-mile races, and plan to run the four-miler (and walk, too!) in September with one of my kids.

And I have three great kids. Each unique in their own way. One like their mom. One like their dad. And one with a mix of the two of us.

Please, I urge you strongly to watch the following video. Yes, this man has had a MUCH harder life than I could ever have had, medically speaking.

Thanks to the UNCONDITIONAL love of his father, his dedication to his son, and the fact that this man NEVER ONCE let the obstacle of severe disabilities his son has hinder the now-grown man from enjoying life to its fullest capacity despite being so severely disabled that he requires a Speak Box and a wheelchair.

Believe me, you will need to get out a handful of tissues, because you WILL cry from the awesomeness of witnessing the powerful pull of love.

Thanks to fellow member Rainey, from the FaceBook group, Abled & Disabled United for Community Change for initially posting the video on the group's wall.

Thursday, May 12, 2011

To Those That are Wondering...

Why? Why do I do it? Why do I put it ALL out there on the line on my blog? But not just this blog, but two of my three other blogs as well. My fourth is just an interest/enthusiast blog, so to me it doesn't "technically" count.

Bryce and I are a lot alike. But we are also different. At least where childhood is concerned.He is currently legally disabled via our state and receives funds and services due to his disabilities. I got funds, services and a handicap parking spot when I was little.

Back then, I was ridiculed, teased and shunned for being different. My son is now going through it. Almost daily. Especially where one kid is concerned. I'm doing what I can to get my son to just walk away, NOT say a word and tell an adult. This kid even rides the bus with my kids, and yes the driver has had to speak to the brat who yells sometimes awful things from his seat window.

I was more so different on the outside of my body. My son is different on the inside of his. Primarily his brain functions where emotions, thoughts, processing and maturity are concerned. But he still has the tics that get worse depending on his anxiety/stress level and his medications.

Some people wonder how I can go and "put it all out there" for the world to see on the internet. How I can be with my life. Maybe part of it stems from being shunned as a child for being different and forcing me to be a bit more secluded.

Then again, my mom, who I understand that in her own way, had the best of intentions, made sure that I had a bubble-environment childhood as to "keep me safe". It was bad enough I could never REALLY learn to swim or do a few other things because of the trache. It was bad enough I couldn't talk til almost three years old, or take my first REAL drink from a bottle or sippy cup until I was about two years old. But I missed out on sports opportunities, having more than just a few friends that I could basically count on one and a half hands.

We as a society were not AS open about disabilities, especially intellectual ones when I was small. In fact it wasn't until I was in my late teens or early twenties that subjects that were before considered "taboo" were coming to the forefront of news, information and education among the masses.

Autism (in all its forms), ADD/ADHD, Depression, Bipolar Disorder, Schizophrenia and other "hidden" diseases/disorders such as Diabetes (both Type 1 and Type 2).

And with this blog that I write in, to tell the life of what it's like to parent a child with a long list of mental/emotional/behavior disorders, what it's like for HIM and us as a family unit, is for one, an OUTLET for me...I struggle almost daily trying to deal with (like this week) his severe mood swings and other "quirks" as I also parent two NT girls that were birthed before and after my son.

Also, it shows our family dynamic and how it works. We aren't the Brady Bunch, but we aren't like the Cleavers from Leave It To Beaver, either. Think more along the line of The Simpson's, crossed with a hint of the Huxtible's (sp?) from The Bill Cosby Show.

Also, I use this blog as an education and informational tool as to help others understand my child and those like him. He isn't your "average" kid by a long shot. Heck I STILL am surprised at certain things that come out of his mouth as he speaks his ideas and how he views his world.

I'm NOT one to shy my children away from the world. I don't go around prancing and telling everyone if I'm taking a dump in the toilet, nor do I give my exact address/phone number UNLESS I know you on a personal level.

But I do let you, the reader take a peek in to the window of what I call my life and the life of my family. Because I know that there ARE those that truly wish to gain insight from those that ARE there, or at the very least have been there. And believe me when I say that no two families that are dealing with the struggles we do, are alike in EVERY aspect. We all as a family, and as a Special Needs Parent/Blogger have our own unique things to offer.

I may "teach" something to someone here. But I can easily learn from a fellow SN parent from their blog, too. My son and I, and our family face new challenges EVERY single day. And it feels good to know that I'm not only NOT alone, but that I am in good company.

Wednesday, May 4, 2011

SOL Testing & My Kid (PYHO)

I've decided to do this as a POUR YOUR HEART OUT post, seeing as indeed, I'm writing in regards to something that I have kept bottled up inside since last Friday.

Now, the main rule with this hop/carnival/meme is the "golden rule" of life. If you can't say something nice (or constructive, even if you disagree), then refrain from saying anything at all. Why? Because this may be the ONLY time/place that we that participate in PYHO CAN say what we feel about something that is going on in our lives or are on our hearts/minds.

With that said, if you want to participate too, just click on the PYHO button below, grab the link-up and go for it.

Thanks to a friend over on Twitter, Tough Cookie Mommy, who also has a blog here on Blogger of the same title, I have today's post.

She is a teacher, and I am just a parent. But our kids, two states different are having major testing this week. I think her's have more state-based types of testing, due to the name of what it is.

But my two oldest who are in fourth and fifth grades respectively, as well as the third graders, are having SOL testing this week.

What IS an "SOL", you ask? It stands for Standards of Learning. It is a Federally-based/mandated test that the children take one time during the year (near the end of the school year).

Some (3rd and 5th) take all five subjects (math, reading, soc. studies, science and writing aptitude). The 4th graders take only two subjects (math and reading). Plus the kids take SOLs again in High School, also. And in Senior year, if you fail just ONE subject, they will NOT let you graduate High School with your class.

The higher the overall scores for SOLs that the kids bring in, combined, the more money that they get, as well as more close to complete Accreditation. And their intake of funds depends all on those Accreditation percentages.

Now, what's MY beef with this, you ask? Let's start off with the yearly phone call (message board-generated, mind you). It never fails. The weekend before testing week for SOLs and PALS (lower grades) testing, THE call comes in.

"Get a good night's sleep", "eat a good, filling breakfast", "tell them to do their best" and all the other crap.

Now, note that this is the ONLY time of year that this type of call comes out to us parents. And to me, that's pretty pathetic. Why? Because it *seems* that this is the ONLY time of the year that the school TRULY cares (somewhat) about how these kids do, education-wise. But (to ME) it's more about "raking in" the money. Remember, the better the overall percentage of Accreditation scores, and individual scoring (up to 600), the more money from the Government the school receives.

Last night, I asked Bryce if they had let him go to another teacher's room (the Title 1 class), where there would be basically no one but him and said teacher, as to take his portions of the test this week (he did the first of the two already). YEP! He did. And he will again today, as well.

Now, tell me why they would let my child go to another area (be it the classroom, library, office, or wherever) to take his tests for SOL, but they ignore his (and my) request to do this for him during the OTHER TIMES of the school year?

Funny. That has (all along) been one of the (very) few accommodation requests that BOTH (he as the student with special needs, and I as the parent) of us have asked a number of times for during the last few school years. In writing AND in person.

Right now, the school's finances and their reputation are on the line within the eyes of the Federal Government. But they need to WAKE UP and realize, too that their reps are ALWAYS on the line with the general public at large AND with the parents of the students that they serve.

While it's no longer surprising that this happens to Bryce EVERY single school year, it certainly does piss me off. Because it blatantly shows (in my eyes) that they care (obviously) more about the money than the children and THEIR potential and ability.

Tuesday, May 3, 2011

Verbal Abuse/Assault. I'm tired of it.

Verbal assaults. Gotta love 'em. Yeah, I just LOVE getting yelled at by a ten year old. And over what are seemingly mundane things.

Like getting up for school and being told that I will NOT "cater" to his every whim as if he is a two year old.

This merry-go-round is getting to be an insanely OLD ride. I want to get the hell off the damn thing.

Why me? Why am I to be the "lucky" one to be bombarded in this manner? I'm just completely TIRED of this shit.

All I hear from Bryce is that he is a "tween" and is ten years old. And that he is a "big boy" now.

But each time he acts the way he did this morning, I remind him that he is NOT acting his age and that for being a "tween", he being more like a "toddler".

I came THIS close to back handing him in the face for being so verbally abusive to me. Telling me to shut up and to not tell him what to do. And for yelling at me for MAKING HIM get up for school.

Now, for the next 4 to 8 weeks, he will be WITHOUT his Nintendo DS, computer time and be in bed by nine o'clock EVERY night (including the weekend). If he keeps pushing me, it's going to be moved back to 8:30 or even eight PM.

I'm at a point where if this crap doesn't change, and soon, I'll seek out a detention home or a group facility for the behaviorally challenged (which there IS one or two in our area for kids with these types of special needs).

I deserve better than this. So do the girls. We should NOT be subjected (almost daily) to verbal assaults and threats. Nor should we be getting physically harmed due to my son's lack of control.
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