Day 6- Finding "Your thing"

Sorry about Day 5, I got a migraine and after it left I felt too numb to get my brain in enough working order to write complete sentences that people could actually understand. So here is day 6! :)

Day 6

So, what do I mean by your thing? Well, as special needs parents we often don't get a lot of opportunities for "breaks".  I know myself personally, would sell my left arm (I'm right handed) for a week long vacation to an all inclusive resort where the only thing expected of me was to lounge in a pool with a swim up bar. I've never been to a place like this, but I hear they exist. I've never left the country, ever. I rarely travel outside of my state, unless it is to visit family in a state that borders mine. My life is boring in the traveling sense. Honestly because the idea of traveling with special needs children in exhausting, not to mention we just don't have the means to do it. So I am forced to find my happy place right here in my own home. 

What makes me happy? Music. Specifically? Country music. More specific? Country music the way it was meant to be heard, not this Taylor, who put all this pop in my country, Swift. Loretta Lynn, Patsy Cline, Merle Haggard, George Straight, Miranda Lambert. And I sing, a song here, a song there, I sing a little all day long, if I really need to de-stress I can turn on my playlist and have my moment of zen. My real therapy comes from performing on stage. Which I don't get to do often since I got out of doing it when I had kids. Slowly but surely however, I'm getting back into it. Boy, does it feel good too. Ironically enough my Aspie girl LOATHES when I sing. You'd think it was nails on a chalk board to that child. She can't stand country music and it breaks my heart. She likes Taylor Swift, go figure, Lady Gaga, hey I can get down with her every now and then, but thankfully we've found some common ground in Adele. THANK YOU ADELE!!!

Where I'm going with all this is, if you can't get out every now and then for a date night, a coffee date with a friend, something to get your mind off the day to day of dealing with all that is we deal with you need to find SOMETHING that makes you feel like you. And I'll admit. Music isn't the end all cure all for me. But it is the one thing I can call mine. Some it is scrap booking, some knitting, some Farmville, some barrettes ;) So do me a favor. If you don't have "Your Thing" find it. Everyone needs something they can claim as their own.

***And BTW before I get hate mail about Taylor Swift. I think she is a fine young woman who writes her own songs and sings. However, I do NOT believe she belongs on country radio. Thank you very much :)

Day 4- Wandering

Wandering/Elopement is a common occurrence in the Autism and Special Needs community. A 2007 online pool through the National Autism Association, indicated 92% of parents reported that their child/ren with autism have a tendency to wander, but no formal estimates are available.

I honestly can not explain what wandering is any better than The Autism Wandering Awareness Alerts Response and Education (AWAARE) site. So I will direct you to them to find out more about it. I will link you to their FAQ page and encourage you to tinker around their page further :)

So what can you do if you have a child that wanders? Heck, I suggest this for any child that cannot communicate their name or phone number in the even they get lost and cannot find their way back home or to an adult they know. First step, a difficult to remove ID bracelet. Simple, low tech. Alert, Disability on the outside, Name and phone number on the inside. If your child has acute medical needs obviously you can expand on this. 

Some good sites for bracelets....

N-Style ID

Call them, they might give you a discount code ;)

http://www.n-styleid.com/children.html?limit=all

American Medical

http://www.americanmedical-id.com/marketplace/build.php?buildwhat=sportband_jfk

MedicAlert

They are running a special right now for Autism Awareness Month

Enroll your child in MedicAlert Kid Smart* membership for $29.95 and receive your child's basic** ID plus a sports band ID. 

Annual renewal is $20/year

http://www.medicalert.org/

For a child that likes to strip their clothes or frequently remove their bracelet/anklet consider temporary tattoos! This is a link I found but I believe there are companies where you can customize your information. Be careful with these however. You don't want the information to be displayed in a way that a stranger could  learn the child's name and lure them away from you. Be safe, use common sense.

http://store.safetytat.com/store/index.php?main_page=index&cPath=1_8

Tracking Devices

Here is info on Project Lifesaver and LoJack SafteyNet

Project Lifesaver

http://projectlifesaver.org/Lifesaver/about/where-we-are/

SafetyNet by Lojack

https://www.safetynetbylojack.com/

For those that do NOT live in a coverage area...this device may or may not be helpful. 

No, it isn't waterproof, it's kind of like a cellphone, but not as fragile. If you have a computer or smartphone, or even if you don't it's kind of like OnStar but for your kid. As long as it is in an area with a GPS signal they can find your child. They or you can even speak to your child to try and keep them calm. Your child can speak back. It is under $100 and there is only a small monthly service fee.

http://www.greatcall.com/5star_urgent_response/

And finally if you've made it this far and you don't have a child that wanders, thank you for reading up on the subject. I'd also like to point out something else. If you've never had a child that wanders you will never know the shear terror that strikes your heart in the moment you realize your child is gone. Therefore if you see a child out in public wearing a "leash" you cannot assume it is due to lazy parenting. It may just be that parent's way of assuring their child doesn't end up on the 10 o'clock news. Could it be a parent that just doesn't want to watch her kid? Sure, but it could also be a parent that has had one too many heart attacks that day and just wants to keep her child safe. Let's try less judgement, more understanding. The world will be a better place if we all just try that more often.

Day 3- There's a Storm a Brewin'

As there are thunderstorms popping up throughout the area I live in it got me thinking, I used to love storms. The bigger the better. Thunder boomers I call them. Thunder, lightening, the steady down pour of rain. Don't ask me why I used to like them. I still kind of do, although now, a part of me feels anxious when I know one might be coming. I'm checking the radar. I'm checking for warnings, when it will be here, what are they calling for, how bad is it going to be? So what changed? Asperger's.

It all started in January? February? IDK. An early storm ripped through the Midwest causing tornadoes to rip through downstate Illinois, Indiana, Ohio, and I'm sure other states as well. This obviously sparked discussions at school between the teacher and the students that caused Grace a lot of stress and anxiety. I won't go into details because I'm sure she wouldn't appreciate it being out there for the world to know about. Needless to say it caused her to hyper focus on storms/tornadoes. We were due another round of possible tornado producing storms a day or two after that. Grace was obsessing over this, she was convinced our town would be leveled. She was worried about going to school because what would they do? There are too many windows! Where would they go? How would they be safe? What about her animals at home? I needed to make sure that all the animals were taken to the basement while she was at school. But not the bedroom with windows. We can't be in a room with windows.

Thankfully that storm slipped around our town like we were in a protective bubble. I think the universe knew we just couldn't take it that day. I was hoping she'd forget the incident at school, she'd forget the discussion, but no, it seems the fear is here to stay for now. So tonight, instead of sleeping upstairs in her room she asked if she could sleep in the basement because there could be tornadoes tonight. While we're only due for possible thunderstorms, whatever she needed to do to feel safe was fine with me. She was passed out well before her normal bedtime and hopefully she'll sleep through any thunder boomers. I'm still torn, to me thunder is soothing, I love a good storm, but now that I know it stresses out my daughter so much, how can I ever find them soothing again?

Day 2- Why I'm "lighting it up blue" !

I don't care who started "Light It Up Blue". I don't care if you agree with that organization or not. I'm not here to agree or disagree with them, because honestly I'm new to this ballgame and I don't know a whole lot about it. So, I'm going to tell you my reasons for lighting it up blue today and for the entire month of April. Our special needs journey began with our youngest daughter over three and a half years ago. We are still no closer to a diagnosis today than we were then. A diagnosis won't change our day to day, but without one there is no ribbon, there are no groups to join, there are no diagnosis specific support groups, you're stuck in the unknown. I can spread awareness about special needs, the Special Olympics, and Spread the Word to End the Word, which I do, with my whole entire heart. 

Now, with Grace, there is Autism. And with the month of April, Autism Awareness, and Light it Up Blue. So I'm going to support my Aspie Girl just like I do my youngest. I'm going to change my porch light and I'm going to throw a blue lantern in my window for good measure. I'm going to shine a light on Autism. Hopefully more people will learn something from all of the posts people are putting up all over Facebook. My daughter is not rude, she lacks social skills and doesn't know how to conduct herself in social settings well. My daughter is not a dirty hobo. Clothing makes her uncomfortable and the only thing she likes are cotton t-shirts and sweat pants. She doesn't like to wash her hair and will make it clear she only does so because she's being tortured. If you don't brush her hair it won't get brushed, because that again is just torture. No she doesn't have a dot on her forehead, that is her ever present wound because she "picks" when she's stressed or in uncomfortable situations, which is pretty much all of the time. Now, she has two spots on her head and more on her arms because it's summer, ya know, short sleeves and all. So, yeah, I started rambling but you get the point. 

I'm not lighting it up blue to annoy you for 30 days.

I'm not lighting up blue to make everyone who doesn't have Autism or a kid with Autism feel bad. 

I'm not lighting it up blue because I want to be cool. 

I'm lighting it up blue for GRACE!

Day 1- A curve ball

Stuck on Shelby is participating in the 30 days of Autism Blog Challenge put forth by Asperger's Rules! Please go check it out and the other bloggers that are participating as well!

Day 1

     It's April 1st, the beginning of Autism Awareness month. In previous years this month didn't hit me personally. Sure, Shelby was probably going to end up under the PDD-NOS umbrella because of her Global Developmental Delays but it never really felt like that fit. She never had any autism traits. We are no closer to a diagnosis now than we were when our journey first began. Shelby will be six in July and she functions at a late two early three year old level in most areas. She is loving, outgoing, and very very social. She is on the go from the time she gets up until the time she goes to bed. She swings and swings and swings, both on her indoor net swing and outside. She doesn't really have sensory issues like most kids but if she's "off" it will usually help.
     So, ok, if that's the case with Shelby why does this year hit me personally then you may be asking? I'm getting to that. You see, I have two other kids. Grace, my oldest, is 10. She's in the 4th grade now. I'm really struggling on a place to start with this. In October or November we started seeing a therapist. Grace was having issues in school that seemed beyond "normal". Despite her teachers efforts and our efforts at home she seemed to be very stressed and anxious. She was shutting down. I couldn't reach her. I couldn't talk to her. In fact she'd barely speak to me, save a few grunts. After the therapist met with Grace on our very first session the therapist said to me, "I don't normally bring this up so quickly unless there are so many red flags I can't ignore, but...have you ever heard of Asperger's or High Functioning Autism?" And I just stared at her. I stared, and stared, and stared, and finally I said, "Oh, my, God, it's so flipping obvious isn't it?! Where has my head been? My mind NEVER went there!" And as we went back through her behaviors it was one "Aha!" moment after another!!
     I went home and started reading everything I could find on Asperger's and girls. At first I felt incredible guilt for not thinking of it earlier. I mean I'm her mother! I've got friends that have kids with Autism, I have a special needs child myself!!! Why did I NEVER connect the dots myself?! But the more I read the more the guilt washed away. Girls are simply harder to read than boys. They are often over looked as being "dramatic" as being "quirky", as being "immature", because their symptoms often manifest so much differently than boys. At least this is often the case with Aspie Girls. As Aspie girls grow up they learn to "mimic" their peers making it that much harder to diagnosis them. Thus the reason why Aspie girls often make it to Jr. High, High School, College, and beyond before ever getting an Asperger's or High Functioning Autism diagnosis. Some end up being mislabeled as ADHD or bi-polar, social anxiety disorders, or a combination of these. There are women in their 30's just now getting the proper diagnosis.
     So, we're continuing with therapy, it's helping, a little, more in us understanding each other than anything. We're holding intervention meetings at the school to determine what we can do to help her with her struggles there. They've done their testing and we're waiting on the results of another one by speech, the pediatrician agrees Asperger's is the correct path as well as the therapist. We're waiting to get into Easter Seals for our "official" diagnosis but at this point it feels pretty darn official to me. Life is a daily roller coaster. I never know what a day is going to be like from one hour to the next. So with that, thank you for reading all of this. And stay tuned for tomorrows post. What it will be? I have no idea!