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.

Kids and Adults. See the Difference.

Yesterday, my son had a Psychiatric appointment. While in the waiting room, a girl not too much younger than him came in. I knew RIGHT OFF THE BAT she has a moderate/severe form of Autism. She mainly played "alone" away from the group of kids at the table (including my 3 kids). But in the end, two of mine went and played with her, as did another little boy.

In that moment, I had seen firsthand how CHILDREN are more accepting and less afraid of communication and interaction with another person, despite being profoundly disabled, in contrast to the *adults* who are TOO SCARED (as in may say or do something "wrong" within the interaction process) to interact with them.

These kids all had something in common in that room. THAT is what drawn them to one another. The fact that they ALL are disabled, mentally in one way or another, you *can't* see OUTSIDE (for the most part) what their handicaps are. But they all understand one another and eachother's "quirks".

If only more people, primarily adults could be like those kids. To see PAST an individual's "quirks" (disabilities) and interact with them on a more personal level of "normalcy" and compassion. To do so would make this world a MUCH better place to live.

Just like my son and his older sister. They can fight and scrap like cats thrown in to a tub of water and getting a bath. But when push comes to shove, my oldest (the girl) says that NO ONE had better DARE call her little brother names (like retard) or pick on him in any other way. She said if they do and she finds out, the bully will be dealing with HER...Same with my son about BOTH of his sisters.

My daughters SEE and also have experienced firsthand what their brother's differences are and can be like, from other "normal" kids (and boys his age). But they are accepting of him for who he is, and what his "quirks" are.

They know when to run and hide, when to stand up to him and when to defend him. In the end, he is their brother. Period. Not disabled, weird, different or "nuts in the head".

Just a kid that is a bit off, but is still lovable just the same and is treated no differently.

Head Games

I'm still on my "hiatus", but needed to come here to vent and let off a bit of steam.

All of last week, while B was getting up and going to Day Camp with the Behavior Therapists from where he gets his mental health treatment, everything was great. It was a REALLY good week for him all the way around. Both there and at home.

Somewhere along the line, on Sunday though, it all changed. I can't say as to why, when during the day, or how. But B spiraled out of control.

There were no problems at church (first time back in about two years, almost) during Sunday School or Sermon. It was starting as we had to wait for my husband to get us (has poison oak and didn't want to share). Smart answered, yelling at me, walking off, non-compliant.

It only got worse from there. At home. Picking on his little sister. Yelling at her and at my husband. Kicking things, tossing things or knocking them to the floor.

Then Monday comes around. One problem for yesterday was he was out of his Vyvanse (had his last pill Sunday before church). But he was pretty good in the morning, getting up, dressing, calm and pretty manageable. Even with the bus being almost 40 minutes late.

By 2:00 in came he dreaded call. What he did Sunday, he did at camp on Monday, too. I let her know that he can't get any Vyvanse until this morning and that Sunday was JUST as bad, WITH the medicine.

Last night after he got home, about 3:00 and on until he had to go to bed early, was no picnic either. Same crap, different time of the day.

Why do I always get my hopes up? Why do I always think "hey, it's getting better, let's hope it stays that way", only for this shit to happen within HOURS of saying it. It's as if I jinx or curse myself EVERY single time. Because as soon as I see and verbally note a POSITIVE turn around, he reverts back to the same-old-same-old.

By evening, I just wanted to go off somewhere alone and cry my eyeballs out, scream, hit something...anything. I'm tired of this roller coaster with my kid. I have two others that need me to attend to them, too. But when B gets like this, ALL the attention is put on him as to ensure everyone (and everything, including animals) are safe from his wrath and destructive patterns.

I'm sick of it. I'm sick of the diseases. I'm sick of his mood and personality changes..I don't PMS as hard as this boy seemingly does! I'm sick of others "handling" my kid, when it's MY job, but basically am NOT allowed to "correct" theirs. I'm tired of family that just doesn't seem to get it, that NO amount of "spanking" will make him "shape up". I'm just sick of ALL of it. And sometimes, all of them...And him.

If that makes me a bad person or mother, then oh well. At least I haven't walked out on him or my family over it all. Most people would. I can't. I won't, no matter how much at times I wish I could just toss my hands up and say "I'm DONE!".

April Is...

I have a lot of causes and "awareness" topics/subjects I like to make others "aware" of. For one thing, I am a Transplant Recipient, so I have already posted about becoming a Registered Donor.

I have *tried* to bring forth attention/awareness to how Group Homes for the severely disabled are "ran". Sadly though, barely anyone read, let alone said ANYTHING about the atrocities that had taken place in that facilities and in others ALL OVER THE WORLD like it. I found and used a couple of videos from a (now closed) institution in Bulgaria. To read and watch the videos (that are heart breaking, but THEIR voices SHOULD be heard), please CLICK HERE.

Not only is this the month (April) for Organ/Eye/Tissue Donation Awareness, but also for Autism/Asperger's Awareness as well.

I personally highly suspect Asperger's in Bryce. But the doctor (is this a surprise?) INSISTS (without testing him, mind you) that he DOES NOT have ANY form of Autism.

These children (and adults) are more like us "neurotypical" folks than you think. They just have some quirks that can seem a tad bit odd to the lay person and see the world through a different pair of glasses than most other people do.