SEVERELY Mentally Handicapped Kids *Tourtured* By Own Mother

I'll just let you watch the video and let it speak for its self... Because I honestly have NO words.

Posted on YouTube on Nov. 11th, 2011 from a local news channel in St. Petersberg.

GRAPHIC DETAILS!

Kids and Adults. See the Difference.

Yesterday, my son had a Psychiatric appointment. While in the waiting room, a girl not too much younger than him came in. I knew RIGHT OFF THE BAT she has a moderate/severe form of Autism. She mainly played "alone" away from the group of kids at the table (including my 3 kids). But in the end, two of mine went and played with her, as did another little boy.

In that moment, I had seen firsthand how CHILDREN are more accepting and less afraid of communication and interaction with another person, despite being profoundly disabled, in contrast to the *adults* who are TOO SCARED (as in may say or do something "wrong" within the interaction process) to interact with them.

These kids all had something in common in that room. THAT is what drawn them to one another. The fact that they ALL are disabled, mentally in one way or another, you *can't* see OUTSIDE (for the most part) what their handicaps are. But they all understand one another and eachother's "quirks".

If only more people, primarily adults could be like those kids. To see PAST an individual's "quirks" (disabilities) and interact with them on a more personal level of "normalcy" and compassion. To do so would make this world a MUCH better place to live.

Just like my son and his older sister. They can fight and scrap like cats thrown in to a tub of water and getting a bath. But when push comes to shove, my oldest (the girl) says that NO ONE had better DARE call her little brother names (like retard) or pick on him in any other way. She said if they do and she finds out, the bully will be dealing with HER...Same with my son about BOTH of his sisters.

My daughters SEE and also have experienced firsthand what their brother's differences are and can be like, from other "normal" kids (and boys his age). But they are accepting of him for who he is, and what his "quirks" are.

They know when to run and hide, when to stand up to him and when to defend him. In the end, he is their brother. Period. Not disabled, weird, different or "nuts in the head".

Just a kid that is a bit off, but is still lovable just the same and is treated no differently.

Head Games

I'm still on my "hiatus", but needed to come here to vent and let off a bit of steam.

All of last week, while B was getting up and going to Day Camp with the Behavior Therapists from where he gets his mental health treatment, everything was great. It was a REALLY good week for him all the way around. Both there and at home.

Somewhere along the line, on Sunday though, it all changed. I can't say as to why, when during the day, or how. But B spiraled out of control.

There were no problems at church (first time back in about two years, almost) during Sunday School or Sermon. It was starting as we had to wait for my husband to get us (has poison oak and didn't want to share). Smart answered, yelling at me, walking off, non-compliant.

It only got worse from there. At home. Picking on his little sister. Yelling at her and at my husband. Kicking things, tossing things or knocking them to the floor.

Then Monday comes around. One problem for yesterday was he was out of his Vyvanse (had his last pill Sunday before church). But he was pretty good in the morning, getting up, dressing, calm and pretty manageable. Even with the bus being almost 40 minutes late.

By 2:00 in came he dreaded call. What he did Sunday, he did at camp on Monday, too. I let her know that he can't get any Vyvanse until this morning and that Sunday was JUST as bad, WITH the medicine.

Last night after he got home, about 3:00 and on until he had to go to bed early, was no picnic either. Same crap, different time of the day.

Why do I always get my hopes up? Why do I always think "hey, it's getting better, let's hope it stays that way", only for this shit to happen within HOURS of saying it. It's as if I jinx or curse myself EVERY single time. Because as soon as I see and verbally note a POSITIVE turn around, he reverts back to the same-old-same-old.

By evening, I just wanted to go off somewhere alone and cry my eyeballs out, scream, hit something...anything. I'm tired of this roller coaster with my kid. I have two others that need me to attend to them, too. But when B gets like this, ALL the attention is put on him as to ensure everyone (and everything, including animals) are safe from his wrath and destructive patterns.

I'm sick of it. I'm sick of the diseases. I'm sick of his mood and personality changes..I don't PMS as hard as this boy seemingly does! I'm sick of others "handling" my kid, when it's MY job, but basically am NOT allowed to "correct" theirs. I'm tired of family that just doesn't seem to get it, that NO amount of "spanking" will make him "shape up". I'm just sick of ALL of it. And sometimes, all of them...And him.

If that makes me a bad person or mother, then oh well. At least I haven't walked out on him or my family over it all. Most people would. I can't. I won't, no matter how much at times I wish I could just toss my hands up and say "I'm DONE!".

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 (new..as 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.

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.

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.

ADA and it's historical Significance

ADA, also commonly known as Americans with Disabilities Act, which is now integrating more and more Disabilities over the last couple of decades is an often misunderstood Federal Law. There seem to be more assumptions made, than having facts spoken of.

To get a better view about the ADA, please watch this video that is just a few minutes long.



Sadly, for those individulas who like my son, have what are called "invisible" or "silent" disabilities, getting the ADA to work for them is a chore, to say the least.

The less a person LOOKS disabled, the less likely that the ADA will benefit them. At least this is MY personal experience in regards to trying to have the ADA work in Bryce's favor. I'm still fighting to get simple accommodations at school. Not to mention, he is LEGALLY obliged to receive the 504 Plan. But again, the school is fighting me on that with mundane excuses.

Here's some facts about Invisible/Silent Disabilities.



We as individuals with invisible/silent disabilities and/or those as their caregivers need to get louder than we have been. We need to start shouting from the rooftops. Especially where CHILDREN are concerned. They are the most overlooked individuals.

Why? The simple answer is that because they are KIDS. Kids are stereotyped as being too young and should be able to have things "bounce off them" as if they were rubber balls. Basically, they are too young to be so inactive. Or too young to have "such things" (such as diabetes, which in its self can be QUITE debilitating).

Some children (and adults) don't "look" sick on the outside, but are debilitated on the inside. They may keep medical equipment within their vehicles, out of plan sight (which was the case with me as a small child), in case of an emergent situation.

For twenty years, the Americans with Disabilities Act (ADA) has fought long and hard for those that are VISUALLY (as in seen as they are physically disabled) disabled. Just within the past decade, that I MYSELF know of, have the silently disabled been justified with being included in the fight for Federal Law to also encompass their needs of inclusion and legal fairness to be seen and heard as having REAL disabilities and to be afforded the same rights and Due Processes as their visibly impaired counterparts.

I hope that this post has served it's purpose as being a learning tool, a historical piece, and a means to get more people involved in the movement to bring to light that those with silent/invisible disabilities can and ARE productive individuals within their communities and that they should be able to obtain the same rights and inclusions as those that are blind, deaf, physically and/or mentally challenged.

SSI/SSDI...What Are They?

My son gets SSI for children. He basically draws off of myself and/or my husband's collected Social Security benefits that I did at one time pay in to, and that my husband, through his employer, IS CURRENTLY paying in to.

Most people have a misconceived notion that my child draws off of ALL tax payers. Not true. It's off of myself and/or my husband, only.

Please watch the two following videos, especially the second one in regards to information pertaining to SSI/SSDI and what Mental Disorders/Illnesses MAY qualify to collect, and it's application processes.

*DISCLAIMER*... I do not endorse either of these gentlemen. I have not ever made contact with either, nor am I receiving any monetary gain for featuring these men and their companies.

Doing Things Different This Time.

I'd gotten a call out of the blue from Bryce's Case Manager over at Child And Family Services (where he gets his therapies as needed, and sees his Psychiatrist).

Before leaving from his appointment earlier in the month, I once more mentioned to be sure to let me know about Day Treatment Day Camp. I skipped last year as to give Bryce a "break". This year, that mistake will NOT happen again.

Plus, Bryce enjoys going! Hr goes to different places. And it's all-expense paid by the funds received by Day Treatment.

Medicaid picks up the tab for my child to go. Federal Grants and community donations help fund the various activities.

Not only does my son get to do fun things Monday through Friday, but he receives the help of a trained staff in behavioral issues, and talks with a registered Psychiatrist or Psychologist once a week.

But apparently (according to the Case Manager), things are going to be a tad bit different. In a GOOD way!

Those that pick which students are in need of Day Treatment services during the school year will be there to watch the kids that are NOT being served within the school setting (including MY kid) and observing them to see if indeed they can qualify for help and to get the ball rolling.

Two years now, two teachers agreed that Bryce needed extra help in the classroom. Behavior management, primarily. He's been disruptive of others, non-compliant at times, not staying on task or being well organized. And I can only do so much from home. And the teacher herself can only do so much individually with him, seeing as there is a minimum of 18 kids in her class that ALL demand attention at some point.

Even if he can get assistance via the Day Treatment Therapist for an hour a day, or every couple of days, I think, and truly believe that it would make a tremendous amount of difference.

And my hope is that when all is said and done with the summer's Day Treatment Camp and the observances made, that Bryce will be one of the ones that will be selected for the extra help.

Though, I must admit, it's a bit hard at times to stay positive or optimistic about things such as this. After being shot down, ran over, screwed over and flat-out denied so many times, it can sometimes be difficult to stay in that positive frame of mind. Especially since I have yet to be able to fill out the papers to place Bryce in DTC.

Blog Hop With the Weekend Wander Crew!

Happy Weekend to all! I hope your Saturday is quiet, stress free and full of fun.

It's that time again for Weekend Wander with the fab blogging community, For The Love Of Blogs.



Come and join in the fun! But first, be my guinea pig if you will and see if your link will post on my Inlinkz blog hop area. Just follow the directions (including about leaving a GENUINE comment on THIS post..As in NO copy/paste or a "I followed, now follow me" thing.

Have a great weekend everyone!

Wordless Wednesday...All About My Lil Man!