Archives

Need Support? We’ve Got It! (group link incl. in post)

I hope that everyone is well and is ready for the weekend. I know I am! This weekend shall be a bit busy. This evening, it’s haircuts for pretty much all five of us. Saturday is CLOTHES SWITCHING day to ready for the warm weather. Then Sunday, I’m hoping to get us and my Brother-in-law, his girlfriend and their kids together for a cookout at the park.

I’d like to take this post and tell you a bit about a place on FaceBook, that while not very active (at the moment), is a place of unconditional acceptance of our fellow members. From all walks of life, and of all different disabilities, as well as care-giving.My group is called Living Life…Abled & Disabled. But the name may change, seeing as I have been sprucing up the place a bit and doing some rearranging, getting things placed in a more organized fashion and whatnot.

We accept members as young as thirteen years old. And we do not limit the types of disabilities to be within the group. And there’s also a few “common sense” rules that I have in place, as to deter any major problems, spamming or other unforeseen fiascoes that could arise.

Here is the “description” from the group’s page itself…

“Some of us are deemed “disabled”, and some of us are those that care for someone, or love someone who is disabled.

Together, we join as one, to support and gain insight and help from one another.

We accept those that are 13-years-old and up to join us.

*Instead of “auto-adding” friends to the group, please send them a private message with the link available to them, and explain why you would like to see them join.

I personally hate the “new and improved” way of having the FB groups ran via the site managers. I want people to WILLINGLY join. Not feel forced.

Thanks for understanding.* ”

Underneath that, are the rules that are laid out for members and prospective members to adhere to. Like I stated earlier, they are all common sense, and are a means to keep peace, order and organization within the group’s walls.

I’ve been trying my best to get more members involved with the group. I’m not just talking about posting articles and whatnot. But ACTIVELY conversing with one another. At least on an every-other-day basis. And it’s true that I had not been quite active in the last couple of weeks. But that was due to out-of-the-home commitments where my kids and volunteering are concerned.

Plus, I put a quick end to obvious “spamming” that was happening. I don’t care WHAT it is being posted. If that’s all you post about, then to me (and most others), it is spam. And I refuse to have that in my SUPPORT group, where I want to see EVERYONE participate and support ONE ANOTHER. Not just take, and NEVER give back.

Support. That is what we at Living Life…Abled & Disabled are all about. Support, understanding, and a shoulder. But I want it to cut BOTH ways. And lately, it has NOT been that way, like it used to be in the beginning. And I’m hoping that soon, we will have that once again.

So, if you feel that the group is right for you, where we VALUE YOUR PRIVACY, seeing as it is a “closed” group where only members can see what is being posted, and you feel that you can contribute, not only for yourself, but to be a support to other members, then please, by all means, join us TODAY! All you have to do is “Ask To Join” and I will approve your request.

I hope you all have a wonderful weekend, and I hope to see you become a member of Living Life…Abled & Disabled soon.

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.

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.

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…