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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.

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)!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Enabling vs Disabling

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

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

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

So without further ado…

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

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

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

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

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

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

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

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

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.

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.