Sunday, September 13, 2015

Oh she acts just like you-Great! Where can I hide?

As I mentioned in my precious post Abby will be 11 soon and has just started the 5th grade. You know what that means?

Prepubescent attitude. Mood swings. General bitchiness..... Yah I said it, Deal.

So what do you do with a kid like mine who's getting too big for her britches? She cannot speak for the most part. She can't use her hands. She can't sit down by herself or climb in her own bed.  She can't go out with her friends or be left unattended. So taking away her phone she can't hold or speak into wouldn't work. She can't make it to her room on her own and if she did what would I do?  Can't take away anything from a kid that lives trapped in her own body .

So I guess I just let her be pissed and bitchy and deal with it right? Except here's the thing. She's mean. And brave. Just like a typical kid these days. There is no fear of consequence. In my day I was scared to death of my parents. I did what I was told or there were consequences. Bad ones. Typical parents just don't discipline these days so most of her peer models don't mind either. This kid....the one who has no purposeful hand use? She can  pull your hair out or snatch and eye ball with deadly, ninja like accuracy. I'm not gonna do it back . I do the full Ally Mcbeal visual of it though. Makes me feel better anyway.

The best move ? She bites. She is totally sneaky about it though. Even if she's not mad or being pissy. She loves to lean in for a snuggle and come back with a chunk of boob or arm. Leans in for a big wet kissy and bites your lip till it bleeds. Then her evil ass just smiles like,...."You're  welcome."

Ummm thanks?

I guess what I'd like to know from you other Special Needs parents is what do you do? I've tried taking away whatever show she is watching at the time and making her sit. I guess that's one of those stupid time out things the younger generations think works. Yah not so much. My kid doesn't wine and cry. She doesn't stomp her feet. She goes into full you have broken my heart I can't breath, self harm nuclear meltdown. Ever seen one of those puppies? Picture this...her eyes dart back and forth in a total panic...real fear. She starts to rock and tremor....I say tremor because it's not a nervous shake. Something closer to Suge knight is holding me upside down over a balcony type response . Then she screams and cries. Real tears as she hyperventilates and turns colors. Then she will drop and plank out like an abortion protester and start to pull her hair out and bite herself as if..hell I don't know.. Then she will get so upset she will vomit and choke, she is actually that she may die because I've turned off Dora or the Wiggles. There is nothing about it that appears like she's playing me.  I promise I don't say, "just for that I've set off a poison and turned off the oxygen in the room."

But you would think I'd said just that.

So I'm sitting here typing and she's sitting here next to me watching. Looking at the screen then looking at me...searching my eyes. I told her I was writing a blog about how bad she was. Faster than I could  take my next breath she rolled back, growled and kicked my right upside my head.


No seriously. Stop laughing and help me!

Wednesday, September 9, 2015

When a Mom Can't fix it.

As most of you know I took some time off from the world of blogging and social media for the most part to deal with life. Every once in a while it has to be done.

Abby just started the 5th grade. Yes seriously. Our baby is in the 5th grade. Almost unimaginable isn't it? Considering they told me when she was two to take her home and make her comfortable and that she was going to die. To all those uneducated scientists that ruined my life that day

The one thing they did tell me that day that was absolutely true, although it also sent me into a complete rage was,"There's not much we can tell you..You'll have to go on the internet and find other parents with children like yours. Special Needs Communities can be incredible."

I remember at the time thinking that the doctor needed to be hung upside down from the 10th floor by his feet. What a jerk right?

I think he may have prepared  himself before that meeting almost 9 years ago by reading the same paragraph in the back of an Autism book from 1983 that I had when I figured out that Rett Syndrome was probably what she had a few month earlier.

It was the only thing he said that day that was true. I wasn't much of an internet person at the time (It takes me a few years to catch up on any trend. lol

Who I am today and who I was on that day are two incredibly different people. I remember going straight home and doing as I was told as far as not Googling Rett Syndrome or anything about it. Seriously Rett can be such a bummer. Especially since the internet is not regulated and anyone can write anything they want about anything. Like the bathroom wall in Jr High. Back then the idea of talking to strangers, especially at that time made my stomach turn but I gave it a shot.

6 months after I can say I had friends for life. All except one, at that time I had yet to meet. There are those moments in the beginning when you feel so incredibly lost and alone. Having someone to call or turn to makes all the difference in the world in putting your heart and mind back together. I never once had a parent who had been there not take my call, night or day. Not once. It did not take me long to become one of those parents.

Soon after I started my own support group when I saw that all my friends were friends with each other. They also had never met in person. I can truthfully say that I have learned more from Rett Syndrome parents and Special Needs parents than any doctor has every been able to teach me or get me to understand. Having someone say its okay to be angry. To say that you have every right to feel cheated. To have another human being that can finish your sentences on the very first conversation. That happens. Its real.

I guess what I'm trying to say to those of you that are new to this journey....There are people that are out there. There are people that do get it. There is a bond when someone knows your heart and soul the first time they lay eyes on you or hear your voice. Sadly, many times friends and family just don't get it. For a very long time that made me very sad until one day I wondered how I would feel. I'm a fixer. Most Moms and friends are. What do you do when you just cant fix it? No matter how much you would like to? Most pull away and avoid. They avoid their hurt and they avoid your hurt. Most of them are not the soulless jerks they seem to portray. Its a defense mechanism, Fight or flight. Learn to forgive.

If you are new to this there are people out there that get it. They want to help. They do it because they don't want to ever feel as lost as they did when they started this journey. Healing hearts heals hearts....for everyone.

If you are a family that has been in this for a while and holed up and buried yourself because you didn't want to deal with anyone else..that is completely understandable. If you ever need anyone. We are here.

This is how we fix it.
I have many links on the sidebar to the right. If you can't find what you are looking for please feel free to contact me.