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)!

"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.

NT Parents vs. SN Parents

I am a mother.

I am a mother to three children.

I am a mother to three kids, where one of them has "problems".

I am a mother to three kids, where one of them has "problems", but that I love all equally.

You say that there is NO way you could do what I do, put up with what I put up with, and defend what I have to defend.

You say we are a strong, but rare breed. But there are more parents like me than you most likely even know. Because we don't look to be recognized or placed on a pedestal.

We do what we have to do, when we have to do it, as to ensure that our "special" kids are getting everything in life that they deserve.

That includes being as close to "normal" as we can get them. And to obtain the specialized services, that though are supposed to be rendered by Federally mandated Laws, are not always put in to place.

We rejoice at what most people take for granted. Especially when they are "late bloomers". We cry from the frustration. Not just our own, but the frustrations that our children display.

We want what ALL (okay, MOST) parents want for their kids. A better and fulfilling life.

You and I aren't THAT different in the world of Parenting. We, like our children, just do things a little bit different from the rest of you. And we see things (like first words, first steps and the other norms of growing up) a tad bit differently as well.

Other than that, I'm not much different from you. And yes, you CAN do what I do on a daily basis. Because when push comes to shove, when it comes to your child, you would do most ANYTHING and move every mountain and boulder to help your child achieve their very best potential.

Do I want to just throw my hands up and quit? YES! Sometimes, the fight to help your child achieve can really tire you emotionally and mentally. As can their daily struggles and fights of will. But in the end, no matter how much you want to just turn around and walk away, you CAN'T. You know for a fact that you have invested WAY too much time, energy, and most important, love in to helping your children succeed to the best of their ability.

So, the next time you think to yourself that you could "never do my job as a parent", or think I must be a lot stronger than you, take a step back and think, and know that when it all comes down to that fine line in the sand, there is really no line at all.

Case Manager Mismanagement

Yesterday, I had to drag my family out in to the unseasonably hot Summer heat to take B to his yearly check up. All went well, though he cried like Hoover Dam when he got two shots in his bony arm.

Then, it was off to brunch at a Biscutville in the area where the doctor is (next town over from us)being that only one of us five ate any breakfast. No, it wasn't the boy, the mom, the dad or even the big sister. You got it. Littlest one was smart enough to eat BEFORE we were to leave.

Then, it was off to Child and Family Services, where B has his Case Management and his Psychiatric appointments. I stopped in to drop off the Medication Dispersal sheet for school, being he has to have backup of Vyvanse there, just in case. And while there, I was able to meet up with the CM to sign the needed papers for the next six months to a year (depending on the information).

At one point, she got to talking to B about his not eating and how even skinnier he looks from the last time she had seen him (about a month ago).

This is where the trouble began. And where my "Mama Bear" came out, claws ready.

At one point of the "eating" conversation, I"stepped in" and noted that now, I am seeing troubling signs of his (non)eating habits starting to spill over to his LITTLE sister. She is EXTREMELY picky, just like him. She "bird pecks" most of her meals, just like him. And she is not willing to try foods, just like him.

Needless to say, I got the "you shouldn't compare B to S, and you need to concentrate on B. And I am ONLY going to concentrate on B"...Excuse me? PART OF YOUR JOB is to oversee the needs of the FAMILY, not JUST the client him/herself. And I have LEGITIMATE concerns that ultimately affect my ENTIRE family.

Mind you, I was signing papers that she was LATE getting to the proper areas, but was "hunting" me down to get them signed. Some were back from APRIL. The others were CURRENT paperwork. I even back-dated the older ones (to save her from getting in to trouble).

If what she said about one of my kids being more important over the other was said BEFORE I started placing my "John Hancock", I would have dated the OLD forms for YESTERDAYS date, just to be a bitch.

And I have seriously considered contacting B's former CM who is now HER boss and ask if what she said was correct and/or acceptable. I addressed concerns for BOTH "her client" and for HIS little sister. It wasn't until I said anything, that HE finally got it and is now seeing how HIS habits are affecting others in the home.

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.)

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.

"...And The Little Children Shall Suffer."

These are a bit old, and one is graphic, but reality is what it is. Especially in places such as group homes. Not just here in the US, but many are like this ALL over the world, in various countries.

The following videos were filmed between the years of 2007 and 2009 in Bulgaria.

**WARNING! What you are about to see is graphic, as well as severely heartbreaking. But their voices NEED to be heard.**

(Part 1 of 5, view the other parts via YouTube, please.)



There is actually a Part 6, in which we see the transformation of how the residents are treated and interacted with. Milen at this point is about to be moved to a smaller group home setting.



As we can see here, it is a universal fear of parents, family members and others, that those in group settings such as this, globally, that we love and want the best for, in terms of Group Home Care for the Severely Disabled, as fellow human beings, would be sadly mistreated and neglected as we have seen in these videos.

But it does NOT have to be this way. These children (and adults whom also require group home care) need more than just a diaper changed or food shoveled in to their mouths. They need more than "basic" medical care.

If only more "employees" of these homes (around the world) would take TIME out of their "busy schedule" to find it WITHIN THEMSELVES to interact on a more personal level. Hold them. Talk to them, even if the child (or adult) cannot understand them. These people THRIVE on interpersonal interaction and a level of LOVING care.

Mama's Coming Out With Guns A' Blazin'!

That's it! I'm done. I can no longer keep up the facade and make it like I will just "go with the flow". For the last (almost) four (school) years, I have done everything in my power to ensure that Bryce gets SOMETHING. A 504, an IEP, or just a few SIMPLE accommodations.

LEGALLY, by state and by FEDERAL law, he is ENTITLED to services. He falls well within the IDEA provisions to receive services for his disabilities.

The Case Managers that my son has had over the last several years have all written the schools (two different ones) letters of explanations of each disorder, what medications he is on, and what serves are HIGHLY recommended to utilize to let Bryce have the best possible educational outcome.

No matter what though, these people have trampled over the laws, me, the doctor, the Case Manger, and worse yet, my child.

Well, to that, I say...

NO MORE!

For far too long, the school system has bucked the Medical System. Now, I'm done playing around and having lies told right in front of my face when I forge ahead to get services during Child Study Meetings.

Now, I am looking in to pulling in a Disability Rights Advocate. Their office is located in Richmond, Virginia. This is the last step before seeking a Disabilities Rights ATTORNEY and fighting the Schools (Administration, down to the school its self) in court.

I'm not only going this far for MY child. But I feel that I am representing HUNDREDS of families in my state by fighting back and saying "no more!". The Psychiatrist once told me that when I write to Congressmen (which I have several times), I am not only representing myself and my child, but representing up to 1,000 parents and children in the same boat as us. It's apparently a statistical fact.

So when I begin the uphill battle (yet another) to obtain what is RIGHTFULLY and also JUSTLY my child's to obtain, I am not only going to be fighting for him and my family, I will be willingly taking on the challenge to make a difference for hundreds or thousands of families in just my area alone.

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.

If your child is on MEDICATIONS, read this *NOW* and learn from my problem.

I'd initially wrote this post on my main blog page, "The (Not Always) Happy Homemaker Diary", but also wish to share it with you readers here as well. Mind you, this took place yesterday/last night.

If I could, I would have this shooting out of my head..

And have these shooting from my eyes...

Why?

Because, for the now third or fourth time, my local Walgreen's Pharmacist has messed up. It's one thing to miscount the number of pills. It's also one thing to not even fill one of them. Heck, it's even one thing to place your child's medications in the WRONG "filled and ready to go" bins.

But when your "mistake" at reading the prescription goes as far as one, filling it with the WRONG refill number, as well as with the WRONG DOSE, that is when I am DONE.

And that is also when I write to Corporate Office, and to the District Office, and to the Local Store. Yep. Every single level of Walgreen's got a copy of my letter of complaint about this "mix up".

The medications that my child is on are pretty "powerful" and can have some pretty bad side effects if given wrong. The one that was completely dispensed wrong can hurt his Blood Pressure or even his heart.

What SHOULD HAVE BEEN 2 mg. of a dose at 2 refills was ACTUALLY FILLED as 3 mg. dose with 3 refills.

How does someone read a "copy" wrong? When in doubt CALL THE DOCTOR that prescribed the medication, THEN proceed to fill it. It's not rocket science.

Please, my readers, for your safety and for the safety of your family, especially your children, READ LABELS on the medication bottles. Every time. No matter how many times you filled the same medication.

Here is a copy of my letter to all of the branches of Wallgreen's...

To Whom It May Concern,

I'm writing to complain about the (now) third or fourth "accident" in regards to my son's medications being improperly filled.

My nine-year-old is on medications that can have a great impact on his heart and his blood pressure.

His Intuniv was filled COMPLETELY wrong. I was supposed to have 2 mg dose with 2 refills. Instead I received 3 mg dose and 3 refills.

I cannot tell who had filled my son's medications last night, seeing as you do not have your Pharmacists place their names on the prescriptions that they are having to fill. That alone to me, is discouraging. Because I now cannot tell you in fact WHO ACTUALLY filled my child's medications.

At this time I am NOT "taking my business else where", but do know that I will NOT be talking very kindly about your store, and especially not in regards to this branch.

When filling medications, it means that your staff is literally holding their customer's/patient's lives in their hands. Including children.

Thank you,
Melissa C