"ADHD isn't *anything* but a myth."

This dude's nothing but a crock of crap! He is NOT a certified Medical Doctor (and actually ADMITS to such claim). And apparently, so is Depression. It's a "moral dilemma". The ADHD is an "imaginary" medical condition according to this dummy.

Ones like this asshat has NEVER had children most likely. Or never had kids with these disorders.

On The Merry-Go-Round We Go!..Again.

Well, another appointment has come and gone. Another one minus his Case Manager. THIS time, due to a death in the family.

First of all, we talked about B.'s medications and his eating "habits" of BARELY eating. Especially since again, he has lost weight and is showing the visible signs of it.

So, the doctor and I have decided to cut back some on his Vyvanse by 20 mgs. I will be placing the contents of the entire capsule in to a glass of water, pour out 2 ounces of a 7 oz. glass, then have him drink the other 5 oz. of water to consume 50 mg. of the medicine. I should know in a couple of weeks of doing this if it was the right move.

As for the Seroquel and the Intuniv, they are staying at the same dose of 50 mg. and 2 mg. amounts.

If push comes to shove, I will strongly consider a drug that is used in cancer patients to induce hunger and the wanting to eat. This would hopefully counter the unwillingness to eat and help him gain his weight and proper amount of muscle mass back.

His spinning/walking backwards is apparently a compulsive problem. He does this a lot. Like in Sears and the mall, where he almost knocked some things over and almost hit in to people.

And I found out that the noises and the sniffling (constantly most times) is a couple of tics that he has developed. But I cannot say for certain that it is medication-induced, or brain-induced tics. I think that at the next appointment in April (or was that March?), I will ask about that.

Also, his nose bleeds have been more active.

The highlight to all of this? He hasn't been getting in to AS MUCH trouble in school as of late, with his behavior. Homework and attention? Still not that great. But we are working on it.

Special Needs Parent Monthly (#1)

Welcome to the kick off of a NEW blog series, where MONTHLY, I will feature a Special Needs Parent. If you are interested in being considered as a featured SN parent in a future posting, please email me at melmom2angels@yahoo.com.

First up is Robin. In her own words, she will tell of herself, her family, and her life with having a disabled child.

basic info....stay at home mom, married 16 years in Feb., I enjoy reading, photograghy and word games.

have 2 sons Derek 11 and Jacob 13..

life as a special needs parent well, I don't sleep much lol. it's a struggle to balance my time between my sons since Jacob needs so much of my time. Jacob was dxed at 2 years, he was a good baby, well a great baby...only cried when he was hungry. Everyone was jealous but in the back of my mind I was worried. He was To good! He didn't regress, he just reached milestones late. He didn't babble, point, or "play" like other kids his age. He started PT at 8 months, Ot and speech at 18 months and early intervention at 2.

He is in the 8th grade and I'm going to start home schooling next because he will be going into high school and I feel like he will benefit more from one on one and I can pay more attention to the areas that of important to Jacob. He LOVES music, football, water, and food. lol which is a challenge because he is on the gf/cf diet.

He's a good dancer. He has severe IBS and when he is in pain he becomes very aggressive. He doesn't know his own strength. He gives the best hugs in the world! He has a lot of sensory issues and likes deep pressure and massage.

He likes to be petted on his arms some times which gets us strange looks in public. lol Doesn't bother me, I'm outspoken if people are rude I let them know about it.

Autism is just part of our family....you learn to adjust your life accordingly. Jacob is non verbal so I am his voice....and I have a big mouth (hehe)!

The Perfect Night That Wasn't

Last night's trip to the mall was an embarrassment. Even Dad had a hard time with B. My oldest wanted to go to a few shops with her Christmas money. So we made it a (supposed to be) nice family outing. Dinner at Golden Corral and then the River Ridge Mall.

Even the restaurant thing kinda went downhill. But the mall trip was worse.

At the restaurant, he would barely sit in his seat, was boisterous and loud. He while in a happy mood at the time (which I AM thankful for) notably bothered certain surrounding customers with his "antics". It was almost like the viewing of things to come. And that was the MILD part of the evening.

Like I said, the mall was FAR worse.

He was running around, trying to get (way) too far ahead of us, walking BACKWARDS or spinning as we walked in the semi-crowded areas of the mall.

As we were ending our night in Sears, where we had initially parked, anyways, it was BAD. Constantly handling things, running in to and hiding in racks, running off and "escaping" down in to other areas of the general area that I was at.

It got so bad in Sears, that at one point, I grabbed him by his shirt collar and held on for dear life. Of course then I was "choking" him and he was almost yelling for me to let go. I am SOOO thankful that barely a customer was in that area.

He also tried to go out the "merchandise pick up" door just off from the girls/baby section. And of course, I stayed there with him and the older one, who was still shopping as Dad took the younger one to use the toilet.

I honest cannot say what got in to him to be so freaking high strung. But good Lord, I was sure that someone was gonna call CPS on me for "man handling" my kid as a means to corral him.

Oh! And he almost knocked over a couple of displays or hit people as he walked backwards AND spinning. Both in Sears and in the mall area its self.

It was just a washout of an evening. All thanks to one kid and his actions. What was meant to be a NICE family outing, turned in to a chaotic nightmare for all (as in the two sisters and myself and Dad).

*Vent over*

"Invisible No More" (video)

Take a journey with these people and their stories of having hidden/invisible disabilities of varying degrees and ailments.

This is an introduction to those that have been willing to come to the forefront and be the "face" of the Peoples with Invisible Disabilities Community.




Pete Monfre




Lauri Cohen




Andrea Fabry




**DISCLAIMER;**

I own NOTHING. These videos are provided through a YouTube channel for the Invisible No More Organization. And are solely for educational purposes, only.

Spanking a Disabled Child vs Not Spanking & Punishment In General; SN vs NT Kids

I'm a spanking parent. I have spanked my son as needed through the years. Of course, he is of an age and height that I have been able to find other means of punishment (like taking toys/games/computer time away). But the youngest who is 7 years old, though a rare thing, still gets spanked IF the "punishment fits the crime".

I have a friend on FaceBook who had been faced with a dilemma. Her child is three years old, disabled, and has yet to be diagnosed with Autism or any other mental delays. The other day at a family function, her husband had spanked their daughter for BITING, as well as hitting. And not a child, but another adult.

Her husband works a lot at his second shift job and only really sees the child on the weekends.

Mom isn't much on spanking, but Dad is. And when the little girl bit and hit the adult, the Dad got a hold of his daughter and spanked her for her actions. Needless to say, Mom wasn't pleased with how he handled the situation. She said it was more about the embarrassment of it happening in front of the family than anything else.

After hearing (or shall I say, reading) everything, I stated that the Mom can't really be mad at him. If he isn't able to be there due to working a lot, then he hasn't had the time (or maybe even the energy) to be TAUGHT (by her) of what works best with their daughter. You cannot just "assume" he SHOULD know how to help handle her, when he isn't there a lot of the time to learn by watching, listening or hands-on.

She needs to (calmly) approach him when they are BOTH free to get together, and talk with him and teach him what works best with your child. If she doesn't take the time to voice to him what works/doesn't work, then he won't know the BEST options of how to punish/redirect/handle his child.

In time, she will learn the differences of when it's her daughter just being a typical kid getting in to trouble, and between it REALLY being the disability showing through.

But even for as long as I have known the lowdown on my kid, I STILL have moments of wondering which way it is really swinging. In the end though, I try really, REALLY hard to NOT use the "he is disabled and has a lot of problems" excuse with him.

He is treated, talked to, and (most of the time) interacted with on the same level as his sisters. As in, he gets in to trouble just as much as they do.

I don't let my kid use his disabilities as an excuse 100% of the time. If I do/did, then HE would think that he can get out of trouble ALL of the time.

To me, he is just as "normal" as his nutty sisters are. He is just more matter-of-fact and sensitive emotionally than the girls.

I sometimes get HIGHLY embarrassed due to my son's actions, reactions and behaviors. No doubt. But even then, you cannot always "excuse" their behavior on their disabilities.

You have to learn and KEEP a balance between typical kid and disabled kid. Or else, they WILL grow up to think that they can (some literally) get away with murder.

And don't EVER be embarrassed to defuse a situation (such as biting and hitting someone) in front of others. I have done it on many occasions and WON'T be afraid to do so in the future, if need be.

You just need to find that balance, and the key to successful behavior management where child's concerned. Because they are unique individuals, and what works for me or any of the other parents, may not necessarily work for YOUR child, and you BOTH as their parents. There MUST be a middle ground that is firmly established.

Believe me when I say that I have had to (literally) peel my son off of one of his sisters as he bit them and used them for a punching bag. Seriously injuring the baby when she WAS a baby (bruises and a bonked head from being shoved off a toddler bed). Over NOTHING at all. Just got it in himself to start beating the holy hell out of her.

I don't care if a person spanks or not. When it comes to hitting and biting, you MUST take care of the problem RIGHT THEN. Not later in the day. Be it if the child is one year old or 15 years old. Biting and hitting, especially an adult, or a child YOUNGER than the one doing the hitting/biting, is a huge "no-no" that has NO excuses.

In that instance, wrong is wrong. No matter the reason. No matter the mental capacity. No matter if the child is "normal" or "disabled".

My philosophy is, if my "normal brained" girls are NOT allowed to behave in a certain manner (hitting, biting, stealing, cursing), then neither is my "mentally challenged" son.

How is honestly fair for me to excuse the actions of the one, and not of the two? That can and will build up resentment in his sisters against their brother, and against me if I was to excuse everything on the basis of his diagnoses.

Every single day it is indeed a struggle to find THAT balance between "normal childhood" behavior, and "disability-driven" behaviors. Some things though, should be no-brainer behaviors that no matter the mental capacity, should NEVER be tolerated or excused due to said disability.

And like a fellow group member had stated, not everything will work with everyone, nor will everyone believe that corporal punishment should be utilized. I say if used CORRECTLY and in the right situations, it CAN be an effective tool.

But not every offense deserves having a spanking. Just like not every offense deserves a month-long grounding.

I think a lot of my views stem from my own childhood. I WAS a disabled child. And my dad treated me as a normal kid. My mom on the other hand "babied" me. And she did it so much, to such an extent, that it really did tarnish my childhood, and made me resent her later on in life, for YEARS. Even after she died.

There is a time to use the "disability card" (my name for it), and when NOT to. Most times, it was just me being a kid. But to her, I did NO wrong, even when it was clear that I WAS in the wrong. So, I never got in trouble (if I did by her, it was VERY rare) unless my dad was there. And then, I got what he felt I deserved. Yes, that did include a spanking here and there.

The more I recall it all, and the more I think on it, I truly believe I got myself in to trouble, especially around my dad as much as I did, was because I THRIVED on it. I felt like a "normal" little kid.

Enabling vs Disabling

Thanks is going out to a fellow Special Needs mom, Amy, over on FaceBook, who I have become friends with, and her "push" for me to post the following.

We met in a WONDERFUL group for parents like ourselves who are parents to kids that are disabled. And it's a locally-based group for our region, but we accept people from outside the Virginia state lines, as well.

The group is called Parents For Progress, or P4P for short. Our kids have ALL different types of disabilities and mental capacity. We sometimes DO disagree, but never get cut-throat.

So without further ado...

Just two summers ago, I learned how to swim/float for the first time. I was 33 years old (now 35)! If I had what I needed to have done BY the time I almost turned 6 or 7 years old, then I would have learned to swim much earlier, among other things.

Sometimes, even all of these years later, I can find myself angry at my mom for disabling me even more and literally taking away my childhood. And I refuse to let my son to think/feel about me, let alone his sisters for doing the same to them.

I love my mom, and always will. But ever since I can remember, I vowed and have kept my word to it, to NEVER be like her, where parenting is concerned. Even after she had died. And to this day, I will have a moment of anger and resentment pop in to my head. Especially around the anniversary of my "official removal" of my trache tube (December 1, 1989... not even two months after my mom died).

Heck, the way I have been told in the past, I was THE reason why my parents never had anymore children after me. She was scared another baby "would turn out to have the same problems"... Um, MY problems were *somewhat* because of her (having a 50 LB tumor sitting next to me in-utero).

I was extremely tiny and lightweight at birth. I was born almost a month early with extreme fluid on my lung (which collapsed from the pressure and weight of the fluid) and a esophageal fistula (a break in my esophagus tract to determine between the airway and the stomach routes). I died on the operating table like 2 to 4 times in the 18-hour repair surgery (after a touchy care-flight ride to another hospital when I was LESS than 24 hours old), which forever changed the appearance of my shoulder blade area on the right side (and left me asymmetrical in the breast area).

From the day of my birth, she basically (at first, I understood being that I was so tiny and helpless, and gravely ill with having NO hope for a chance at life, really) became a "helicopter mom". Later in my elementary school years, she was STILL so overly protective, that not only did she volunteer, but also was a yard duty person at lunchtime, a lunchroom supervisor, but decided to also become an "assistant" for MY classroom or one near me as to "keep an eye on Missy"... In other words, I had NO break from her. She watched me like a hawk. 24/7. If I did go to a friend's house, most times, she would constantly check on me in one way or another.

Now, maybe some people, especially fellow parents, like myself, of disabled children, can see it from our kid's perspective as well when it comes to being either too lenient, too harsh or too overprotective (or even NOT protective enough).

I know all too well the fine line EACH AND EVERY ONE OF US walks on a daily basis with our kids. It's such a difficult balancing act. But they also thrive on being treated as "just another normal kid". Even when getting in to trouble.

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!

If You Are A Parent Who is Being *Abused* By Your Kids...

First of all, know you aren't alone with being physically ABUSED... yes, abused, by your child. I have been verbally, emotionally abused, assaulted and my life threatened. All by my child.

It had taken me a long time to accept the fact that I was being abused by my own child. When you are left with marks or scars because of your children's actions, or you have things pulled out on you (like knives, hammers and scissors), and have your very LIFE IT'S SELF *threatened* and/or in jeopardy, that is constituted by law as ABUSE. Even if it's by a minor child.

As for medications (no matter the reason for taking them), if you have stopped them, YES, you have to let the doctor know. Tell them exactly why you did it. They have to know for various reasons. That goes for ANY doctors that have taken charge of taking care of your child medically! They base what is being taken as to if they can use other meds for other reasons as to ensure that there isn't any deadly mixings/cross medicatings.

If your child is getting so out of hand, no matter if just at home, both there and at school, or both of them AND within community settings (restaurants, the store, etc.), that behavior modifications (like a reward system and punishment system) are not working, then it MAY BE time to start thinking about ADD/ADHD (if they have it, too) medications and even Mood Stabilizers (like the Seroquel that B is on).

As for DENIAL that something is truly wrong with our kids, and the fact that they need more help than we can give on our own, we ALL go through it. Especially us moms of children such as ours. But also, you have to look at it from THEIR perspective, too.

Our kids do NOT want to be "bad" kids who are different in that view of them. All in all, they ARE *good* kids, but have brains that are hardwired completely different from their peers and from most other people in general.

Medications for the mentally unstable, for KIDS, has gotten SO many bad "reports". Mainly from those that have NEVER even tried them, and are unwilling to try them for their children as a part of their overall therapy.

True, not every child NEEDS to be medicated. But, most of the time, the ones that NEED it, don't get it, and the ones that DON'T need it, are the ones being "doped up".

In the end, the ONLY ones that can determine for certain that your child needs medications that will help with their mental issues is you, the doctor in charge of your child's care (Psychiatrist) and the child (more so their overall mental state).

Yes, I know that dealing with the agencies and doctors, and therapists CAN be a pain in the butt, in the end, it makes life SO much easier, when what SHOULD HAVE ALREADY been done IS being done.

Easier for them and their day-to-day life, and for US as their parents as well.

Schoolward Bound. Fifth Grade, Here He Comes!!

This past week we are about to leave, and the one that is coming upon us has been and will be fairly busy. It's back to school time. And I think that ALL of us are ready. For the most part, anyways.

This week was filled with filling out paperwork, taking in paperwork to be filled out by Medical Professionals, a doctor appointment and school supply shopping.

Geez! Just thinking of what I just listed, I'm tired all over again! *hehe* (=

This coming week, it's REGISTRATION time! And this means now, TWO different schools for three different kids. My oldest is moving on to Middle School.

B is in fifth grade this year. And thankfully, I was able to place him in with my oldest's former homeroom teacher, who is the ONLY one of the three in their grade to be Special Education certified.

It also helps that she taught my HUSBAND when he was a kid at another school, for the third grade. And she started LAST school year to acclimate him by saying good morning to him, giving him his "morning hug" (their classrooms were next to one another at the time between the two grades). And she already has gotten an idea of what his needs will be with classroom placement and what will possibly work best to get the best ability out of his potential.

She runs a pretty tight ship. You do as expected, she is your BFF. You decide to make her life hell and not do as instructed, then your ass is grass. And he needs that kind of firm structure. And she is already on to his manipulations. BONUS!

Do I worry? Yep! But not as much as I have with the teachers of the past in regards to B. This lady is one of the best in her field. And one of the most patient and kind. But also one of the most strict and not able to be bamboozled, too.

I'll more so worry NEXT year, then I will THIS year. Because there is a VERY good chance that B and his older sister will NOT be in the same Middle School, being she was accepted in to a school across town that takes those that are highly advanced/gifted. If she is able to remain there next school year (2012-2013), then he will be in our Zone School for Middle School all on his own.

Yes, he too is advanced in most areas of study. But he doesn't have the work ethic and focus for a Gifted Program. Thanks to his emotional instability, lack of maturity, and his severe ADHD it takes him out of the running for advancement such as what his sister is in. And it hurts me. But at the same time, I can safely say that a setting such as that is clearly not for him.

Should I compare? No. But it is extremely hard to NOT see the difference versus the similarities.

You sometimes, I feel, HAVE TO compare the "odd one out" to the others because it forces you to see just how different the one with the problems truly is from most of society. It makes you step back and think a little more and be more compassionate, understanding and willing to have more patience. Not just with YOUR child with Silent Disabilities, but other children (and adults) with the same afflictions as well.

So, here is to (hopefully) smooth sailing for this school year. In just over a week, and then all three are off on another school-year adventure of learning and fun. But this year, it will be minus their big sister. And I think they will do just fine.

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!".

PYHO Wednesday With Shell.

It is time again for another harrowing episode of...Oh wait! This isn't a Daytime Drama. Then again, it IS "my" drama". Oh hell! Just know I am about to Pour My Heart Out with Shell over at Things I Can't Say.



*REMEMBER FOLKS!*

This Meme/Blog Carnival for many of us is an outlet. Especially for those of us that need a "safe haven" to vent in, away from those that would more wish to hurt us more, than to lend understanding and support. So, if you CANNOT say anything constructively if you DISAGREE, then I suggest you move on. Because believe you me, if Angel over at A Tall Drink Of Sweet Tea catches that you have been bad on the PYHO posts, it is HER that you will be answering to, via her "Flaming Redhead" Vlog.

Now onward...

Bryce had been "pre-authorized" via his insurance to be "Partially Hospitalized" for attending the Day Treatment Summer program this year. So, after playing the game "I wonder if she is EVER going to call" with the Case Manager (CM), I called HER and got the lovely line about how she was GOING TO call me "today". In other words she got caught with her pants down for dropping the proverbial ball.

We decided that I go over to the office to sign the paperwork on Thursday of last week. Now mind you, I had to be outside in the heat a majority of that day at school for their Field Day activities. Plus my husband worked an odd schedule from the norm, by working that day as well. So yes, to go in to the nice, air conditioned office across town later that day completely slipped my mind..All the way through until Sunday.

Today is Wednesday. And I guess that I will be (once again) the one to call HER about coming in TOMORROW for certain (on my husband's actual day off each week) to sign the papers as to officially let Bryce start on Monday at the camp.

You would think that seeing as the lady who is new to her profession of being a CM. would CALL and ensure that all is okay because we had missed an appointment to sign paperwork. Yes, I should have probably called her on Tuesday (being Monday was a holiday). But the last I heard, she gets PAID to do her job of MAKING CALLS to her various clients to check on them (at least) once a month.

What do you want to bet that when I call in about an hour, that she will use the line (again) about her planning on calling me later today. Whatever, lady!

I hate how my kid and the other kids under the care of these Case Managers get bounced around like a ball from one CM to another. They get used to a certain person. Some of them take a good while to get anywhere close to the person who has become the norm in their lives. Suddenly and most of the time, without warning, that CM is "taken away and replaced" with a new CM that the poor kid has to adjust to.

Personally, I find it sadly mishandled in that area. These kids THRIVE on stability, routine and closeness with those that they deem "fit" to be a part of their world.

I can understand getting promoted (as his last CM did). But to switch them as to "rotate" them with the clients of the agency? C'mon!

Oh, and I have YET to even hear a peep from the dumb woman in regards to trying to get Bryce back in to In-Home Therapy, which then YES, would switch him to a QUALIFIED in-home therapist and behavior specialist. I strongly feel it's time again. Needless to say, I bet you two to one, the bitch never "staffed" it with her boss, yet. Wouldn't surprise me in the least at this point.

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.

Kenya...



India...



Botswana...



Philippines...



Liberia...

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.)

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.

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.

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.