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.

Losing Big Papa... The Aftermath

Now the real healing begins. For all of us. Yesterday, we had my children's Great-Grandfather's Funeral and Burial.

To say it was hard to go through is probably an understatement. I was doing good at the church until they wheeled Papa past me on the way out of the church. And I fell apart as Taps was playing and he received a 3-Gun Salute for his service in the US Air Force during WW2.

Being that Bryce stayed with one of my niece's that he is close to during the Chapel Service, he was calm but of course trying to take it all in as best as he could.

Then, he rode with his Daddy to the cemetery instead of me and the girls and Grandma. He needed his father and his Uncle. At this point it finally REALLY hit home what was taking place. True he KNOWS what death is. But he has NEVER been to a funeral and seen the true magnitude of how it LOOKS from his eyes.

At one point Bryce and his little sister came to me at the grave site. Once I started truly getting the full effect of my grief (Taps), Bryce looked up at me, patted me on the back and he too started crying.

Most times, Bryce has to be given "emotional cues" because his brain doesn't react to things (emotionally) in the "normal" sense you or I would have them. His brain cannot process and compute his surroundings as quickly as you or I can. It takes his brain longer to "get it" and to know when it's okay to feel certain emotions and how. For that, he looks to those around him.

And this is exactly what happened as we stood in heavy rain, saying our final farewell to a wonderful man who had loved his family so much and always put us all first (behind God).

As the kids, myself and my husband were getting ready to leave the water soaked grassy area, we said one last good-bye to the man that was a heavy influence to our family. It was bad enough listening to my youngest saying that she didn't want to leave Big Papa alone. But then Bryce too started to cry heavier and said he wished that we didn't have to leave Big Papa behind. I don't know which one of those two made my heart sink lower or give me a bigger lump in my throat.

Bryce was anxiety ridden most of the morning and part of the afternoon, before it was time to go to the Funeral. Like I thought would happen, he did a lot of "self hugging" and tugging of his jacket or shirt sleeves (comforting mechanism for self-soothing) and talking so fast that even Speedy Gonzales would have a time understanding him. And of course, due to the anxiety, talking about so many different things at random at once that you never (literally) knew what would pop out his mouth next..And let's not forget the CONSTANT walking and pacing.

But all in all, while he wasn't your "average" grieving child, he did VERY well under the circumstances. This was also his first funeral attendance. No pressure. He WANTED to go and he also WANTED to view his Big Papa laying in state. I'm proud of all three of my children. But I think Bryce made some HUGE steps yesterday, and I am so proud of him.

Children Like Mine Grieve Differently

My son isn't completely your "average, ordinary" kid. Sure, he does what most kids do in regards to playing outside, playing video games, watching goofy TV shows and other "normal" kid things.

But much of that is on a lower age level then those of his peers. Though he is finally out of the stage of still wanting to watch Playhouse Disney and the Srpout Channel (which he did up until the age of 8 years old).

Three years ago, two of my kids (Bryce and his older sister) got their first "taste" of real life, and the fact that we don't live forever and that those that we love will die one day.

Back then, I only took Hayley (the oldest) with us to the Funeral services. It was her first time seeing a person who passed away laying in state. For the most part, under the circumstances, she did quite well.

Now, tomorrow she will witness the burial of her Great-Grandfather, whom she was quite fond of. And so was Bryce. He will be now attending his first Funeral service.

With him, we have been preparing him for WEEKS of the impending death of their "Big Papa". Yes, there were lots of questions. My husband and I answered best as we could.

Sunday night is when Scott's grandfather passed. And while the two older ones were shook up and in a state of denile and shock, they took it better than I thought that they would.

The next morning though, is when all of that changed. And overnight, my son had changed. I guess from all the pent up grief from the night before.

While most children his age would just fall apart, crying and either go off to be alone or wish to be held as they began their grieving process, Bryce was "showing himself" in a way I had not seen in a very long time.

You see, one of his problems is a processing disorder. His brain doesn't take emotional overload very well, or sensory messages that are too great or too many to deal with at once. And this is apparently what had happened.

And the end result was a nine-year-old boy throwing, hitting, screaming, yelling and crying all at once. It was a classic Manic Episode in full form. Only this time unlike most others, I knew where this one was stemming from. Normally they just "hit" without real warning or cause. While indeed, it was without warning, I was able to figure out the cause pretty fast.

I'd chalked it up to the grief of what we told him the night before just all spilling out at once. But then, it happened on the next morning as well. While I still figured it was the grieving coming out, seeing as they had been too busy otherwise to "really think about it all", I'd had enough. I too have been at the end of my emotional rope.

After day two of this volatile display of emotion, I flat out told Bryce that if this is how he was going to be, then there was NO way he was going to be allowed to attend the Funeral. I said that this was NOT the way that we display our hurt. Especially not there.

And like I flipped a switch within him somehow, he stopped. Yes, he was still crying, but it was more of an "age appropriate" crying and being upset.

Kids with processing and sensory disorders deal with things so much differently than neurotypical children. What may not mean the end of the world to us, and seem quite trivial is equivalent to the world crashing down around them and that the sky is falling.

So when something such as the death of a close friend or family member occurs, their already shaky emotional and mental stability can indeed worsen. And a myriad of emotion can spill out all at once, and along with it come some not-so desired behaviors.

**Also as a side note, I would like to thank our cousin Tara. She was the ONLY one out of all the family that know of Bryce's problems to ask how Bryce was doing and handling HIS loss.

Now I can see indeed why I picked her as the God Parent of my kids. She truly is concerned for their welfare and never forgets to ask about them. Especially my son. Thank you Tara!**

Psychological Effects From A Robbery

On Saturday, February 12th, my home was broken in to. Thankfully, none of us were home at the time of the robbery. I don't care about the money that was taken. And even if more than money was stolen, I wouldn't care about that either. What I DO care about is the psychological effects that it has had on my three children. Especially my son.

Both of the girls are handling things okay. For the most part. They get a little more antsy and jumpy if Dad has to work a late shift. But my son is worried, jumpy and scared of WHEN IT DOES, not IF it happens again.

Now any and every little bump or creak, primarily at night has him practically jumping out of bed (and his skin), begging for the answer to "what was THAT?!?".

In his little mind, which was already in a CONSTANT speed of thought before the robbery took place is now constantly thinking of WHEN IT DOES happen again and has been hatching different "plans of action" for if it happens if we happen to be home, and without Dad around.

It's bad enough he has an Anxiety Disorder. But this makes it a bit worse with his already-constant worrying.

It's no secret in my home that I have young children. Not with books, toys and pictures strewn all over the place on shelves, table tops and in boxes.

Instead of the person thinking about the FACT of there being SMALL children in the victim's home, they ONLY thought of themselves, the money, and the DRUGS that they were wanting to score.

The perp(s) not only rifled through MY bedroom, the living room, and even my laundry room, but also through my daughter's purse (thankfully she had her money on her that night) and both of the kid's bedrooms looking for money.

They did NOT just violate me, my psyche and my things. They violated my children! Now all three of them are worried of there being a next time. Though the girls are dealing with it much better. Sure Bryce could be A LOT worse with his anxiety level being even higher than normal. But it's worse enough.

They took away my children's innocence, security, safety and psychological ease when they took the money.

And now, the Walgreen's up the street the other night was robbed. ONLY OF MONEY. Strange. My husband and I strongly wonder if by chance the guy that was arrested for that was OUR robber as well. Being that in BOTH places, he only wanted cash. And in BOTH places, there are some "good" prescription drugs that he COULD HAVE taken to get high with, but did NOT. Only wanted the cash both at the Drug Store and here in my house. And he is built like a man that could have kicked my kitchen door in, that was BOLT locked, only to tear one side of the door frame clean off.

Do the math. If it DOES happen to be him, heck yes, I'm pressing charges. And not JUST for robbery.