Archives

The Bully & The Brat… And One Mama That Is Fighting Back.

As some know, my son has a lot of problems mentally and behaviorally (which stem from the mentally disabling aspects). And for YEARS he has been bullied. But only primarily by one particular boy.

Now another boy is in the mix. As is a girl as of late, and where this morning’s call to come down and intercede is rooted. Because my son completely shut down on his teacher and the student teacher (or whatever his area is).

So we got myself, the teacher, my son and the other person who was TRYING to handle things together and got the complete story. We (as in my son and I) talked about what he should have done (again), versus what he didn’t do. And what he wouldn’t let the adults do to rectify the situation.

Yes, my boy will be punished (at home) for how he mishandled all this and not cooperating with his authority figures, and for not coming to the phone to talk to me as requested, resulting in my having to go down there.

But the girl is also in trouble for starting crap and calling my kid names and making fun of him.

Hell, I’m so classy and I’m so awesome, I have the balls to not be ashamed of leaving the room and crying in front of the teacher. Again. I’m just sick of this BS. Add in embarrassment and the fact that once more, I felt like I failed him, and it’s a mess of reasons behind why I broke down.

And people are wondering WHY our youth are offing themselves?

Gee! Let’s take a look at how them bully kids are being raised in a home of intolerance and no teaching of respecting those that are different from themselves in terms of disability (of ANY nature). It’s not just the teen and pre-teen GLBT group.

Then, opportunity knocked on my imaginary door… Have (one of the few of them) bullys in room, take a chance. That’s how good I am. I don’t have to talk TO you, for you to know I am referring to you.

Let’s hope my conversation with the brat being present sinks in. It was dealing with the one boy that has picked on my son for YEARS in this school. And now, they are BOTH going to the same Middle School next year.

I even made certain the little demon heard about MY OWN problems with being made fun of as a kid.

I KNOW he listened because if I turned to glance at him, he turned his eyes from me like he wasn’t paying attention. And he now knows I will NOT tolerate it, am utterly sick of it, and this is DAMAGING my child.

Believe me, bullying today is on an entirely different level than it was in my days as a kid with physical differences. I would NOT want to be a kid in today’s society.

What A Difference A Fish Makes!

Meet Lumineon, formerly known as “Petrie”.

 

 

 

 

 

 

 

 

Who knew that a fish, of all things would be just what Dr. Mom ordered?

B’s birthday was on the 12th, and his grandparents gave him $10 to spend HIS way. So, he thought about it, and knowing that the girls were saving for a hamster, he wanted a pet too. And I thought that between the three, they were going to break me. Because, whatever the $10 did not cover, Dad and I would have to make up the difference.

To my surprise (and relief) B said he wanted a Tetra Beta fish. He’s been actually bugging hinting towards having a fish for a while now. But it really picked up steam once he had received money for his birthday. So, seeing as his older and younger sister had saved up enough of their money from chores, and he had his birthday money, a-shopping we did go!

My husband went downstairs to the fish department with B, as I stayed upstairs with his sisters. The guys (as usual) were done WAY before us ladies were. But everyone was happy when we left the pet store.

After Dad set up Lumineon in his bowl and placed him back in to B’s room, the next morning, I’d found something that my son had written. Something that kind of had taken me aback.

A *reminder* note! No one told him to do so. He had thought of this on his own.

Basically, it was stating to feed his fish in the morning and evening with 3 or 4 food pellets.

So far, so good, too. He has been doing well to remind me to feed him if he couldn’t, or to feed Lumineon himself. Let’s just say, we have a VERY happy Tetra Fish.

Oh, and as for the name? Petrie (pee-tree) was initially the name. For one thing, it made sense. The other was that it was easily stated. But, of course the boy just had to switch it on me. And being the Pokemon nut that he is, why was I even surprised at this? Because apparently, the fish is the same colors (blue and red) as some Pokemon that is named “Lumineon”.

 

 

 

 

 

 

 

 

 

 

And I honestly HATE typing the name out too, because my fingers get tongue-tied and I cannot for the life of me, get the name spelled straight on the first try. But I will have to admit, that the Pokemon version of Lumineon is cute.

In the end, having a fish called Lumineon is teaching my son, who usually is one to pass off responsibility to others, and not take ownership of pretty much anything, that HE is responsible for HIS pet, and it’s proper care. And it is teaching him about ownership, not just of a living creature, but that he must take ownership of his own actions and decisions, and of his own things. Plus, B seems to be more focused with tasking than before Lumineon came in to his life.

Thanks, Lumi (my short nick-name for the little guy) for helping my son see the true value of being a responsible, honest and reliable person in his community, and within his home. You have accomplished what most “experts”, and even us as his parents have failed in doing. He may have his “quirks”, but now, we have you. And you, my friendly fish, are showing him the way to being the kid I know he can be, and you are helping to let his full potential shine through.

Judgment

Those of you that have a child with Special Needs knows exactly what I speak of.

It can be judgment from a stranger (most usual form). Or from a friend. Judgment can happen even with families.

Judgment is defined as… (via dictionaryreference.com)

noun

1.

an act or instance of judging.
2.

the ability to judge, make a decision, or form an opinion objectively, authoritatively, and wisely, especially in matters affecting action; good sense; discretion: a man of sound judgment.
3.

the demonstration or exercise of such ability or capacity: The major was decorated for the judgment he showed under fire.
4.

the forming of an opinion, estimate, notion, or conclusion, as from circumstances presented to the mind: Our judgment as to the cause of his failure must rest on the evidence.
5.

the opinion formed: He regretted his hasty judgment.
    The type of judgment that we are talking about today is within the definition of choice numbers ONE, and of FOUR.
    Although, the basis of judgment more often than not, is primarily upon choice number ONE.
    Because most “outsiders” will not know (even within the family circle) TRULY what life is like for our children, or for us as their parents and their caregivers.
    My son, even at almost eleven years old, is a “safety risk”. He has no “I better be certain it is safe” button. He has a “‘wow, that’s cool and I want to go to it’ button”. He can only see what he wants. Not what it takes to get it. Including safety. I worry every time he wants to walk to school (which is not even five minutes from my home). Mainly because the section of road we live on is high-traffic early in the morning. But I have to let him be independent. If I see him crossing the street in the wrong manner, then after school, when he gets home (via the bus), we have (yet another) talk about safety when crossing the street.
    I have had him walking with us in the mall, and he suddenly is far back behind, because something caught his eye and he ran off to check it out.
    Because of things like that, and because of an incident at a huge Theme Park, over in the water area, I for a good while used harnesses on my child. I never have had to do so with the two girls. But then again, they don’t have the problems that he does, and they are really good about listening, staying close and asking to check something out or to go somewhere.
     The times that I have used the harness, be it a wrist one, or one that straps around the chest and over the head, I have gotten “the look” of disgust and judgment. And I say, KEEP ON JUDGING! You have no idea about my child. You don’t know the dangers he can get in to. You have no clue as to how fast he can honestly be.
      To judge ANY parent, based solely on what you see, and nothing on what is known (which in most cases you don’t due to not knowing the people at all), to me is demeaning and rude. And it’s something that sadly, millions of us mothers and fathers must endure every single day. Because people just don’t understand. Some don’t WANT to understand. Some cannot begin to. Not until they sadly have a situation like I have had. And we aren’t talking about a grocery store or a neighbor’s house.
      My son ran off from us at a Theme Park that has a Water Park built in. We were in the section of the Water Park for the younger kids, playing laughing. Back then, my youngest was a baby. About eight months old at the time. In one moment, when both my husband and I turned for a brief second, he was gone. We called and called for him, only to find him nowhere. That’s when panic set in. Next thing I know, we have Park Security, ourselves and a couple of strangers helping us to look for my son.
       Thankfully, he was found (by Dad) not too far off, in the other section, waiting for the huge bucket to dump water on them (Dad took him there a bit before and played with him and had the bucket splash them). He wanted to go back to the bucket area, but told no one, and just took off. He just got it in his head that he wanted to go back, but forgot the step to get his wish. Instead, he (literally) ran with the thought and took off.
        Hence why the next year, we placed him in a strap harness. It helped us, and it kept him safe. Back then, if it were on the wrist, he surely would have been slick and removed it, only to jet off to God knows where. It was a safety tool. Not an abusive parenting tactic. Abuse would be to NOT do it, and let him run off to anywhere he felt led. With no worry of what COULD happen to him. That’s abusive.
         These days, we are no longer using the harnesses. But I tell you what… IF there EVER came a time to need one, you can safely bet that I WILL indeed use one on him. It’s better than him being kidnapped and have unimaginable speaks of horror possibly done to him. My child is TOO trusting and has no boundaries where his social interactions and self are concerned. So, he is an easy target. Personally, I refuse to take that chance. Even at his age.

At almost eleven years old, even a wrist harness may be embarrassing for him to wear, and for us to have to use it. We will I’m sure get nasty stares and a few finger points and snickers. But it’s worth it when I KNOW my son is safe.

Retard!… That’s So Retarded. *Let’s Change.*

“That’s so RETARDED!”

“I feel retarded for saying/doing that.”

“What a retard!”

Have you ever heard someone, or heard yourself say any of the above statements?

How about, “I’m sorry, but your child is retarded.”

When you say things like “I’m/that is so retarded” or “what a retarded thing to say/do”, you are not just cutting down those that have said or done something out of the so-called “norm”. You are hurting those with in the Disability Community. Especially those that have cognitive/mental delays and/or brain injuries. You are implying that they are stupid. Even without aiming the R-word directly at them.

Yes, there is a medical definition of “mental retardation” and “mentally retarded”. But now, as a move and as a means to help end the use of the R-word, medical professionals have become known to now use the terms “mentally delayed”, “mentally handicapped”, “mentally disabled” or “cognitively delayed/handicapped/disabled”. Where in those latter terms do you see “retarded”? Nowhere. And that is a GREAT thing!

Take my pal, Holly over at Holly’s House; Not A Perfect Mom’s Blog and her little girl, Brooke, who has Downs Syndrome. Brooke is what you would call “Retarded”, but that word is NEVER used. She is cognitively delayed, but perfectly cute (and sly) in every way imaginable. And like Holly, I deplore the R-word. And I think it shows one’s ignorance when a person uses the term in a way of means to cut themselves or someone else down. Intentionally or not!

When I was little, I required a trache to assist me with my breathing due to other health issues with my lungs and airway. I had that thing in my throat a good chunk.. no my entire childhood. Had it removed 17 days before my 13th birthday. For years I was ridiculed, called names, mocked and made the butt of my peers’ jokes. And…

I was labeled “Retarded” by children and adults alike. Especially the adults that knew NOTHING of me, except my appearance out in public.

For years, I had to fight that R-word label. Seeing as I was NOT cognitively/mentally disabled. And even if I was, would that really and honestly be a “good” name to label me with? I didn’t think so either.

Please spare me the “Politically Correct” crap. I really don’t need to, or want to hear about us parents of Special Needs kids (or being a currently or formerly disabled person ourselves, possibly) getting all so-called ‘uppity’ over a “word”.

Maybe if you had to wear the label for a day, or even a week, and see how it feels, then rest assured, you would change your mind in a hot second, my friend!

So, join me and take the pledge to “Spread the word to end the Word”.

Go to R-Word; Spread the word to end the Word and tell everyone that you want to help us collectively say “this is wrong and it needs to stop!” today. I did.

Lessons From A Grocery Checkout Line

I have a friend, if not more-so an acquaintance. We both belong to and participate actively in a group on FaceBook that caters to parents of Special Needs children from around our general area of living. Some things, our kids share, but mostly don’t, in the terms of having diagnoses. In the end though, we love our kids with a passion, and are more widely accepting of children that “act out” and of their parents than most people in the general consensus of society.

Yesterday, this dear lady, who’s a mother of three, with two of them being Special Needs, told the group of a great story. Of courage. Of self-preservation. And of compassion.

My husband works for the Kroger Food & Drug grocery store. I had also been employed with them for a few years, up until my youngest, who is now seven years old was born. And his (now transferred) Grocery Manager, and he have a common bond.

They both have Special Needs kids. We only have our son, really. But the Grocery Manager has twin boys. And they are BOTH (severely) Autistic, and one is non-verbal. Both, like my son, have behavior issues, as well. ADHD, too. Both of our families have come under scrutiny out in the community. Mainly because of the aforementioned behavior issues. We have dealt with the stares, the head shakes, the whispers. And yes, even with the unwanted “advice”.

But what this one mother and her children went through, really speaks of all of us in one way or another. And of our children. When I grow up, I want to be JUST like her, I think.

Here, in HER own words (with names left out to protect her privacy, and that of her family), is a recount of what had transpired at her local Kroger store.

“We were in Krogers this evening checking out on a unplanned but unfortunately necessary grocery run, a disturbing event for all of my boys because of their sensory issues. My oldest son was turning over each of the boxes of chewing gum one by one so that the labels were all facing the same way. My 8 year old was clicking and rocking, and my 5 year old was pushing meltdown because of his discomfort being around so many people. My 17 month old daughter was beginning to overheat in the store, because the heater was turned up so high to overcome the cold outside. As I went to try to cool her off a bit by unzipping her jacket she began to fuss because she was becoming uncomfortable.

A woman in line in front of us who was already checking out said to the cashier “I hate it when mothers don’t take the initiative to discipline their children… Its so sad to see someone have so many kids.” The cashier knows our family, and looked at her in a bit of shock.

She said “The boys are autistic, and they’re pretty amazing kids.” The woman shook her head and started to say something under her breath about what a waste, and my 9 year old Aspie son turned sharply and snapped,….

“**I am not a disorder, I am a person.** Just because I appear not to be listening to you does not mean that I cannot hear what you say and do not understand it.”

She looked at me and said “Well, aren’t you going to say something to him?!” I looked at my son, I looked at the woman, and then I looked back to him. I was so proud, it was the first time that I’ve ever heard him speak up for himself, and he certainly doesn’t speak his mind or feelings often.

I paused and looked at him and said “You’re absolutely right bug… you’re an amazing kid.” And then I looked at her and shook my head, smiling. I said to her “Yes, its such a waste when people don’t try to understand what someone else might be going through.” She huffed, paid her bill, and then left the store.

The cashier smiled at me and said “He’s having a good day today, huh?” For everything these kids have been through this week, it wasn’t just a good day… it was freaking amazing.”

WOW! What an amazing testimony. And to me, not only did the mother and the son stand up for themselves, but they also stood up for ALL of us. Parents and afflicted kids alike! They said outright what so many of us want to say, but can’t. Maybe out of fear of retaliation. Maybe out of utter embarrassment of the situation (though not due to OUR actions/reactions). But they had the courage to do it. And I HIGHLY commend them for it.

So, for those of you reading this, and don’t really understand “our world”, please take note. Do not EVER judge a person or a situation solely by what you are seeing, or even hearing. If a child is doing something quirky (like moving/situating a space bar at the grocery checkout counter) but is in NO way harming you, then leave the person alone. If they are mumbling to themselves, don’t stand there and stare. When you think that someone cannot hear you, that’s when they can hear you the most. When our children are acting out, don’t just auto-assume that it’s a “bad seed” with parents that are just not willing to “parent” our child.

It’s people like you, that when you are THAT mean spirited to be as the lady in the checkout, that we hope, wish and pray that you too will end up having a child or a grandchild JUST like ours, to show you the ways of OUR life. Sometimes, lessons are learned the hard way.

Our children never asked to be the way that they are. For some, their minds are their own personal prisons or hells. They can be locked up inside. With barely being able to speak, think straight or communicate their needs and desires.

We as their parents and caregivers, struggle EVERY single day to make life as “normal” as we can for our children. Sure, we have to do SOME things differently with interaction and behavior management. But we take it on as a labor of love. Unconditional love. We see what you REFUSE to see.

So, the next time you see a child in the grocery store being “strange”, know that they CAN hear you. They DO see you. And they indeed HAVE feelings that can and DO get hurt because of oggling eyes and opened mouths, that seem to go right along with CLOSED minds. And us as parents WILL find you to be the DISABLED one.

Special Needs Parent of the Month (February, 2012)

Welcome to the “Special Needs Parent of the Month” post, 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.

This month’s parent is Holly. She is a sweet, very energetic, hilarious and a bit of a potty-mouth (LOL!) lady. She wears her heart on her sleeve. And she has a pretty full plate. In her own words, she will tell of herself, her family, and her life with having a disabled child.

This is Brooke.

She’s my fourth child, my second daughter, and the only one born with an extra chromosome….

Brooke has Down Syndrome.

But please, don’t feel badly for me-or for her. Don’t make that cutesy smile and give me a look of pity mixed with wonder at how I do, especially with four other children…

Because Brooke? Is absolutely fantastic and a joy to have in our family…

I’m not going to pretend she’s exactly like our other children, because she’s not…

There is a developmental delay with Brooke. We just had an evaluation last week and she’s about 6-9 months behind her typical peers…not horrible, but still something that needs to be addressed so that Brooke can the best life possible…

So we do therapy. Brooke has physical therapy once a week for an hour, and occupational therapy and speech therapy twice a week for 30 minutes each. Is it a pain in the butt? Sometimes. Is it inconvenient? Sure, there are days I’d like to not plan around it…but we love Brooke, and we want her to thrive…so we go…

And Brooke loves it! She gets a kick out of people applauding for her, in fact, she expects it now no matter what task she does, so getting constant attention and love for doing puzzles or pointing out pictures in a book is right up that chunky girl’s alley!

But life isn’t all about therapy and trying to make her better…I’m a firm believer in letting her be a regular child.

Brooke plays with her brothers and sister. She pushes her babies around the stroller. She throws the ball. She colors on the walls. She claps and dances along to The Wiggles. She gives hugs and kisses. She throws her lunch at the wall when she’s not happy with what I’ve made.

Brooke is more like your child than different…

So what if she’s going to need a little bit more help learning? So what if she doesn’t have as many words as your kid does right now?

Brooke will catch up…

And we’re going to do anything we can to help her have an amazing life…

Because she’s worth it.

I’m a shameless self promoter by the way…read my blog at Holly’s House-Not a Perfect Mom’s Blog and check me out on my FACEBOOK LIKE PAGE too. And if you really love me, follow me on twitter. And uh, I hate to admit it, but I have a Google + page too #hangsheadinshame. Warning: I have a potty mouth….

"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.