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.

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...

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.

Denial..Why "Our" Kids? (PYHO)

**Reminder..Those of us linking up with Shell at PYHO are literally writing from our hearts, what is on our minds. Good, bad and indifferent. It's a place to BUILD UP, not tear down those of us participating. So, if you have NOTHING NICE to say in your comment, please refrain from commenting at all.**

I've got a lovely, sweet, funny and kind new Bloggy and Twitter friend. Her pen name is The_Drama_Mama over at The Scoop On Poop. I have even added her blog to my Blog list of Special Needs Bloggers here in The "Mental"-ist Mom. Most of the time, she shows us what her life with a child with many mental disorders is like using humor and seeing the lighter side of life.

But she took on a more serious topic for MommyLeBron's "Bipolar Tuesdays" and has shown what progress her daughter has made who's got most of the same diagnosis as what Bryce has as well. To say we "relate" is a clear understatement.

After reading the last comment that Drama_Mama_ had made in regards to our "kind words", the last line struck a chord with me. One that I still at times wrestle with.

Denial.

At first, when my son was a toddler and even a baby, I "denied" that I saw some "strange" things. Like not wanting to be held or touched much. Not liking the textures of certain food types. Crying at loud sounds like a fire engine. Ordering things, and getting profusely upset if you even slightly changed the order or the way the objects sat.

Then came the nasty mood swings that I chalked up to the "Terrible Two's" and "Horrible Threes".

But how can you "deny" facts like your child beating his sisters almost senseless or pulling a knife or hammer on you at the ages of 4, 5 and 6 years old, knowing he NEVER is able to watch movies that "promote" violence such as that?

I tried to "deny" the obvious for so long. And even when I did let myself see the REAL picture and magnitude of my child's problems, his father still was in denial himself. Until he saw Bryce actually pull a pencil on his older sister and heard his son say that he was going to stab her in the heart and kill her...over a TOY.

Not to mention the attention, focusing and extreme hyperness that got him in to trouble with the classroom Kindergarten teacher.

It took us a good two years to get ANYONE to listen and to lead us in the right direction. I definitely suspected (highly) ADHD. But of course the "doctor" (Pediatrician) chalked it up to his just "being an overly active, typical boy". Even after I stated the volatile states and severe mood swings.

At that point, I wondered who indeed was the one "in denial". And I had a CREDIBLE person attend that appointment with me. My mother-in-law who (at the time) was a (still) practicing nurse!

After almost a year later of the same crap, I finally got him in to his current Psychiatrist. It took at least three visits before the doctor would confirm or deny ANY kind of diagnosis for Bryce. He wanted to see my son a few times, get reports from the school, his Primary doctor and what the Case Manager where we go monthly had observed.

When all the pieces were fit together of the intricate puzzle that was my child, at least one firm thing was confirmed. My son has *SEVERE* ADHD. As I sat there and heard the OFFICIAL Dx, I bawled. And not from anger or sadness. From relief. FINALLY. Someone heard me. They BELIEVED me. I no longer had to TRY and deny "something" was off or wrong. After two extremely hard and long years, we were getting somewhere.

Parents like myself, The_Drama_Mama, Angel over at A Drink Of Sweet Tea and a host of others in my Blog Buddy List have times of denial. It's our way of "escaping", if just for a moment. It helps us see the true reality of what our children have to deal with on a daily basis.

Sometimes, "denial" can be a blessing. The reality is ALWAYS with us. But to "pretend" once in a while that our children are like ANYONE ELSE'S, even just for a brief moment, or have the deep-seeded hope that one day our kids will "grow out of it" gives us a tiny bit of our sanity back.

Denial doesn't (always) hurt anyone, if you are in denial for the "right" reason, and not to the point where it can damage you, your child or your family further.

Hence the question... "Why OUR kids!?"

Because they were put here to teach us something about ourselves. Patience, kindness, looking past other's differences, and a host of other reasons.

They weren't our "punishment" for something done in our past. They just want what we all want. Love, acceptance, the chance to meet their full potential and to show the world that "being crazy" isn't necessarily a bad thing.

Nevada..Maybe My State Next For Budget Cuts (Mental Health)

Mental Health Services. It is my son's lifeline. And mine. And my family's. Without them, God only knows what would have become of my child, our family, and my marriage. Because before they stepped in and began helping us almost five years ago, it was a sure thing that my marriage would have ended, my son would have indeed have been placed in a group home (or Psychiatric Ward for an indefinite period) and my family would NEVER have been the same.

I'd done most of my growing up as a child in California. But a few years after my mom's death and my dad remarrying, we all moved to the Carson City area of Nevada. To me, that is "back home" now. And it's where my heart is when I speak of "home".

But now, my "home" wants to damage those that still reside there. And that have mental health issues. Governor Brian Sandoval is proposing Budget cuts. And one area that would be GREATLY impacted is the Mental Health Services within the state's medical community.

Like for myself and my family, THOUSANDS in the state of Nevada depend on the funds to be there within the Mental Health area of medical care to be able to receive quality care, maintain their mental status, or greatly improve their mental state. Especially those suffering from Bipolar Disorder, Schizophrenia and other mentally incapacitating conditions, including ADHD/ADD and OCD.

Please, I urge you all who are reading this, to be sure to read one man's fight to not let Mental Health Aide get thrown to the proverbial wolves. He is a (former) Prison Guard in Nevada who suffers from Bipolar Disorder. And having access to Mental Heath doctors and (much) needed medications thanks to the funding being available to help those that were "down on their luck" and even living on the streets literally SAVED THIS MAN'S LIFE!

Nevada Mental Health Advocates Fear Budget Cuts

What is so very scary for me is that my state that I now reside in (Virginia) may very well be on the chopping block where Mental Health is concerned. And yes, I have in recent months indeed read that there have been "considerations" as to slash funding to those in need of Psychiatric help.

As a mother of a child who has been receiving services through Child and Family Services of Virginia for now almost five years, I cannot sit here and idly and quietly watch this possibility become a reality. My son is legally disabled thanks to all of the problems he has (genetically) acquired mentally. Thanks to his Case Manager, his Psychiatrist, various In-Home Therapists over the years, Summer Programs for kids like him and other services that are tailored to the needs of the mentally ill, my child, and thousands others in our state, as well as MILLIONS within the United States CAN and in fact DO have as close to a "normal" life as a neurotypical (one without mental disabilities) child has.

Friends Are Hard To Come By In This World. (BLOG HOP..Add your link!)

No, I don't mean within THE world in general. But within MY world, and that of my son's.

Unless you (generally speaking) and your child go through what kinds of things we do on a daily basis, then no one can quite understand or comprehend my family's reality of daily living.

So, as you can imagine, friends who REALLY can understand and WANT TO understand, let alone accept my kid for WHO he is, not how he can act are pretty hard to come by.

Same goes for Bryce. He has a few friends. But otherwise, he is pretty much an "outcast" at school. Let's just say, kids can be pretty mean. Even in the fourth grade. And I know with Middle School looming upon him, it WILL get worse before it gets ANY better.

But, what few friends that my son DOES have, they see PAST his disabilities and his Tics, and see the REAL Bryce. The sweet, friendly, caring boy that he really is.

So, take the time to make a new and "different" kind of friend. And don't let outward and seemingly awkward appearances fool you. Because if they are like my son, once a friend, you have a friend for LIFE.

Now, after ADDING *YOUR* BLOG link to my link up tool (below), go find some more FAB FRIENDS to check out over at FOR THE LOVE OF BLOGS by clicking on their button.

Have a FAB Friday, everyone!

Sometimes I feel Alone In Parenting. Now There's A *GROUP* For Us!

I know that there are MILLIONS of parents that have to care for children that are not what society views as a "normal" child. We are of a unique "breed" of parenting. We are parents of children that have a disability of one kind or another.

Some of our kids have just one disability to live with and battle. Some of us have a child or even more than one child in our home that have a multitude of disabilities.

And for most of us, while the diagnosis may be the same in comparison, the way our lives and theirs, their severity of disability and how each individual home decides to "deal with it" may greatly differ.

There are times, especially when Bryce is having a really bad "off" day, I feel so very isolated and alone. Like no one truly understands what he goes through, or that I do as his mother. At times, I think that no one really CAN understand.

But then after the storm passes, I then know that indeed, I am NOT alone. There really ARE other parents out in the world like me that live daily with the struggles of having a disabled child. May the child be physically, mentally, or even emotionally or behaviorally challenged.

Now, thanks to Vic, Ashley and Danielle over at For The Love Of Blogs (FTLOB), us parents that are raising children that are considered "Special Needs" will have a group/place of our own to come together and talk and get/give support.

Most of the time, Special Needs Parents are shut out from the rest of the world. We are considered "taboo", as are our children and their medical problems. And it is such a shame, seeing as our children can teach the rest of the world more than us "normal" people can of how to give UNCONDITIONAL love, support and acceptance.

If you wish to also join the group and get to know other parents of Special Needs kids, just click on the link I provided and follow the instructions.

And you can also join a host of other groups that the FTLOB family is putting together. I cannot say enough about this EXTREMELY wonderful and supportful community, where both fellow bloggers, as well as those that just love to read blogs, can come together as one and support each other, and form some wonderful friendships.

Hope to see you join me there soon!

Sensory Processing Disorder (SPD)

Bryce has SPD. Also known as Sensory Processing Disorder. Though I don't normally talk about that part of his problems. Why, I can't say.

It has to primarily do with sounds for him. He gets 'overloaded' easily with audio environments.

The sounds he cannot stand, we can deal with. Such as a vacuum. Or a siren from a fire engine or police car. Or it could be one of his sisters screaming and yelling (with their high-pitched voices). Even at times, the TOILET seems to be too much.

Also, I have noticed Bryce having problems with certain food textures. He isn't in to things that have even a mild amount of lumps. And things that are too 'gooey' like puddings.

There are days where it seems like I can't go anywhere without Bryce complaining about noises. Especially decently loud ones. I can't take him to concerts, or to where there is a largely loud crowd. He gets too over stimulated.

When over-stimulation happens, be it loud noises, too many foods he can't stand (due to the textures aspect) or even a combination, Bryce can start having a severe fit because he can't control his environment, or he just shuts down and "hides away" from himself and everyone around him.

For me, as his mother, it can be quite troubling to watch and have to help him deal. But also, I am trying to teach him that not everything and everyone can, let alone WILL revolve around his world. At times, he MUST revolve around other people's world and the world at large.

There are times people (strangers) will see this unfold, and of course I get the stares, the head shakes and once in a while, someone will be bold enough to TELL ME that I need to better correct "the boy" and "be the parent, not the friend", being that he just seems to be displaying a spoiled, childish 'act for attention and to get his way'.

Most, if not ALL of Bryce's disabilities can be, and are mistaken for (at times) normal, childish, bratty attention-seeking misbehavior. What I can say is that yes, SOMETIMES, that is exactly what it is. But when he gets that bad, I can honestly say that it is NOT the case. My son CANNOT help it. And that it is the SPD displaying its self.

There are times that I wish I could tie people to a chair, that think that they know *MY* child better than I do, and feel that they are the EXPERT in parenting a special needs child, and FORCE them to listen to loud things like the consistent thumping of loud music, sirens that don't seem to stop, loud horns honking left and right, and shove food in their mouth that tastes like they are eating half-dried mud cake....

And listening to, and seeing everything AT ONE TIME as they are forced to chew on stuff that they can't stand having in their mouth.

I can be safe to bet that after that experience, they wouldn't decide to play Psychiatrist/Parenting Expert again after that!

What Do YOU See In Him??

When you see my son, what do you see? Do you see the happiness he can have most of the time? Do you see that he can be sly at any given moment? Do you see how much he loves his family?

Can you see that my son is Bipolar (classed as Mood Disorder), with OCD, ADHD, Asperger's Tendencies,Manic Depression, an Anxiety Disorder, Tardive Dyskenesia and a Behavior Disorder?

When our children with these 'problems' have an "off" day of lashing out and being 'abnormal', it is OUR normal. We have gotten used to the stares and whispers out in the public eye. Especially when an episode from the Mania he experiences just suddenly pops up during a shopping trip or other outing.

Sure all is fine and good with the world around us....Until *it* happens. Bryce's eyes glaze over in a "haze" and get a more sharp tone. His voice is quiet. His movement almost at a stand still. Then it happens. OUTBURST!

Next thing I know, I am having to take Bryce off to the side to talk him down, maybe even bear hug him from behind. Otherwise he is going to try and knock things over, run off, or hit someone (mainly me or his sisters).

And this is where the world's judges come in. They gawk and stare at the "evil" little boy and the parents that obviously can't "control" their kid. They see that as one of us is dealing with Bryce, the other is trying to maintain calmness with Hayley and Skyler, as to not have them feel upset or embarrassed.

Once everything is said and done, the calm comes as the storm passes. And everything is as it once was before the episode hit. And yes, these can occur at ANY given moment at ANY time of day, in ANY place (even in the home).

What you see as an "outsider" looking in though is NOT what I see. I don't see the "evil" little child that is unruly and needs his "ass whipped more often".

What I personally see as Bryce's mother, and Scott sees in his son as the boy's father is the potential that our son has to become a normal and productive member of society.

Bryce is in mainstream classes at school. And in ADVANCED Math and Reading classes.

He has friends and a 'social life'.

Bryce loves to play games on the computer.

My boy is a major Hot Wheels and Zhu Pets junkie.

He has a wonderful talent for knowing about Astronomy and Science in general.

But Bryce also requires monthly Psychiatric sessions because to help curb MOST of the symptoms of all of his disabilities, he needs medication. And to be sure that the medicines are working properly, there are no adverse affects, and that he is overall doing well, he must see a "shrink".

Okay, yes I said that I "drug" my kid. But, there are SO MANY misconceptions about the medications that are given to Psychiatric patients. Especially those given to children.

My son is not a "zombie'. He is not "foaming at the mouth" or listless. He is functioning at a better rate for his age THANKS TO those drugs. And it helps curb the ideals for him to go and get a hammer or knife and hold it up at me, all the while saying he is GOING TO KILL ME.

Yep, that's actually happened a few times over the years. Why do you think I have to keep the tool room locked? Mainly with the hammer. I don't remember him ever trying it with a knife. But he has raised scissors, ready to strike at me.

What this is all boiling down to is that for parents such as myself, we are tired of "professionals" telling us what we do or do not know. No one knows our children better than us. And when we cry out for help, we EXPECT someone to be there, listen and do RIGHT by our kids. Not pass us off and think that they 'know' our children. When that happens, dangerous or even fatal errors can occur.

Same goes for society as well. When you see a parent dealing with an "evil little brat", don't assume that the kid is just a 'bad seed' and the parent is just not "parenting right". Look at the scene a little closer. Try for a second to put yourself in their shoes. Because their child might be Special too.

Hidden Disabilities get the most "heat" in this nation (USA) and passed off by the general public more than it should be. It's time to stand back and get to know the person before judging them. They are human too and all they ask for, like anyone else is some compassion, understanding, and caring.

ADHD...

The following is a copy of a post I had done a while back over on my main blog, 'The (Not Always) Happy Homemaker Diary'.

And the title of the post was just what it is here, "ADHD". This I hope will give you a first-hand, real life glimpse in to what my son's life is like on a DAILY basis...


As a mother, it is hard to watch your child struggle. What are ordinary, everyday tasks and expectations to us, is a ball of confusion and frustration for our kids.

Sitting still. Focusing. Being organized. Paying attention to the instructor. Following multiple directions at a rapid pace.

Sounds like a lot, and even a bit confusing to you? I'm sure that it does. But to my son, and to millions of other children in the United States alone, it is a hardship for them every single day to keep up with those tasks while in the classroom, and even at home.

Constantly, I have to remind my hyper, active, not-very-attentive son to complete this task first, so he can move on to the next. Then, after that, I have to remind him to let me check his work against his Agenda, to ensure that he completed the assignments. Then, and only then, may he have his computer or his TV time.

The same goes for his household chores. And the teachers have to stay on top of Bryce as well, being he can fall off of the track pretty quick, and pretty often.

Case in point.. Bryce was found to be sitting in the hall, by his Science and Social Studies Teacher's room. Apparently, he was disrupting the class and "poking at" one girl constantly. After being told to finally move himself to an area where he could be alone, he started to bawl and be belligerent. So, the teacher sent him to the hall.

Then, at snack time, when the Mixed Berries were passed out, he couldn't have any, being that the kitchen never made him a separate bowl without the Blackberries, being he is allergic to them. He went buck wild, pitching a fit, not concentrating on the teacher's explanation, and saying he was being abused because she was "starving" him.

It's not ALL stemming from his ADHD. The lashing out is from another disorder he is inflicted with. But the "poking" of the child, his fidgeting, his lack of concentration, and organization skills, as well as his hyperness, even in his talking to others is a part of the ADHD that he has. Bryce has the more severe form of the disorder.

And yes, he is on medication therapy for it. He takes Vyvanse in the morning, before school. His Intuniv is taken before bedtime. It also serves as a sleep aide, being that his brain stays in "overdrive". The Intuniv relaxes the centers in the brain to control his sleep pattern. And it helps him focus on going to sleep, along with his bedtime routine rituals.

One thing that I have noted the last few years, as the parent of an ADHD child that is medicated, is that most (not all, mind you) teachers think that the medication is the "magic cure-all" for the ADHD while the child is in their classroom. That cannot be further from the truth.

While the medications DO help the child stay focused, attentive, and with less likelihood to blurt out or talk out of turn (or even go way off the topic at hand), the medicines can only control those points to a certain extent.

The remainder of the ADHD child's success relies upon both the child's willingness to gain SELF-control and SELF-discipline, as well as the teacher's willingness to work with the child to achieve those same goals that ADHD students need to be successful students.

This may mean giving the ADHD child a separate desk area, where fellow students will not be a distraction. Or even asking the child if the student is understanding and able to follow the lesson. The teacher can't be "all mouth". They must be about action as well. This means walking around, using hand gestures. Anything to keep the ADHD child engaged in the lesson.

On average, the typical ADHD child can give you no more than fifteen minutes of their attention. For the ones with severe ADHD, you are lucky, and I mean LUCKY, to get ten minutes of their attention, being most severe cases have an attention span of only five minutes.

Too many teachers rely on medication therapy. And anti-medicating advocates talk about us parents? MOST of us parents tried EVERYTHING else under the sun for our children BEFORE going the "pill route".

Our child's first line of defense of course, are the parents. Then, the doctors and therapeutic team. Teachers though, as well as the other school staff round out the team for these kids. We ALL have to work together to help these children with ADHD be successful . Within the classroom setting, as well as out in the community and within the world.

So, remember that while ADHD medications DO help, it's far from being the "cure-all" route of having a successful child. One-on-one working with your child (or student, if that is the case), providing the appropriate tools for success, and helping them to build their SELF-esteem and SELF-control are the REAL keys for having an ADHD child that is well-rounded, adjusted, organized and an overall good student in the classroom and beyond.