Saturday, August 20, 2016

I don't know how to explain mental illness to my 5 year old

I'm not a sticker chart, menu planning, activity organizing kinda mom. Sorry to disillusion you if you thought I was. 

And I really hope that I didn't give you the impression that I had it all together, that would be yet another misconception. I'm just a mom trying to keep it all together, myself included. 

"How do you do it?" Or "I don't know how you do it!" 

I hear these on the reg and I always respond with "I don't know, I just do."

And truth be told, I really don't know and it's true, I just do. 

It's very difficult to be a stay at home mom or dad, don't wanna leave them out, there are quite a few dads doing what us moms are doing and they deserve their props too. 

My situation is different and just like I tell my kids, different isn't bad.

I explain my youngest daughter's autism to my oldest daughter in ways that she can understand, and it is hard to explain the "quirks" of being nonverbal with severe autism and severe sensory processing disorder to a 5 year old little girl who just wants to have conversations about princesses, dinosaurs, and other really cool animals, and to ask twenty plus questions, starting with "what's your favorite color?" because hers is purple and she wants the whole world to know it.

"Sissy is different and different isn't bad"

So how do I explain to her that mommy is different and different isn't bad?

I've thought about this a lot and I don't know how, but I'm just gonna have to do it because she's starting to see my "quirks."

Yeah, I've got "quirks" and they are not just starting to show, she's just starting to see them. She's an amazing 5 year old, wise beyond her years. I hope when she learns the truth about me that she won't be disappointed.

My beautiful girl,

You are a piece of my heart and I love you so very much.

Remember how I told you that you have "itchies" on the outside (eczema) and Zoey has her "itchies" on the inside, and that with medicine and lotion we can help your "itchies" feel better, but Zoey's "itchies" are on the inside and we can't see them and there isn't a medicine or lotion to help her feel better...we love her and we try to help her get through the bad "itchy" days. Well,  I have to tell you something my love...

I have "itchies" on the inside too.

My "itchies" make me sad and yes they make me sometimes cry. They make me tired and sleepy and they make it hard for me to run and play with you all the time like you want me to and yes, that makes me sad too.

They make me worry and stress about things more than I should, they make me nervous and anxious and so I sometimes get scared and panic and on those days I love that you follow me around and say "breathe mommy...breathe" but it makes me sad and cry that you know to say that to me because you are only 5 years old.

My "itchies" make me do silly things too, like lining things up from small to big, checking and rechecking things to make sure that they are off and not on, and saying things more than once, over and over because I just need to do it. And I love that your favorite number is 100 but it makes me sad that you know that my favorite number is 3 because I didn't know that you were watching me that close.

I am sorry that we don't do more out and about in the world like most families do, but my "itchies" make it hard for me to be around a lot of people all at once, and that's why you go out on your adventures with Daddy more than you do with me, but please know this my beautiful little girl, I am sad that I can't go on all of your adventures, because I really really want to, but my "itchies" make it hard for me to do that.

I want you to know that there is medicine for me and that I do take it every day and that every Monday when I leave to go to the "doctor" it's because I'm working hard on getting better because I don't want my "itchies" to hurt me anymore.

So you see baby girl, we all have our "itchies" and they are not all the same.

We all have our different "itchies" to scratch, some are like yours, they can be seen on the outside, and then some are like your sister's and mine that can't be seen and itch us from the inside, and although our "itchies" may be different, please remember what I always say...Different isn't bad!

Love you with all my heart,

So that's it, that's all I've got

I don't know what else to say to her, because I really don't know how to explain to a 5 year old that her mommy has mental illness?

Thursday, August 18, 2016

How twenty one pilots helped me understand my daughter's stim

My daughter Zoey is 4 years old, autistic and is considered nonverbal.

She can't tell me her wants or needs or if she's hurt or sick, and as her mom I want and need to know these things. Through intense early intervention therapies Zoey has come such a long way and it has been one hell of a ride.

I found that I could communicate with her through music, and soon my nonverbal daughter started singing, not talking, singing. 

There is a song for just about every scenario in our house. If she says "No" then you will hear her sing "No more monkeys jumping on the bed"... yup that is her rendition of the word No.

Twinkle Little Star was her first song and it is her go to song if she's angry or needing to escape from the overstimulation of a situation or just from the world. 

I watch this gorgeous child stand while putting her hand up in the air as she stares into her palm, like shes seeing a magic in her hands that NO ONE else can see. And yeah, I wish I could see it!

I watch her when this happens and I'm jealous, like really jealous. This one particular stim is amazing. 

She has many stims like rocking and banging her head when she's trying to soothe herself, lining things up all around the house, and she's a sensory seeker, so she has to touch and feel everything. Sand and water are her absolute faves!

But this one stim, it is beautiful and when she does it, I know she can't answer me but I can't help but ask every single time..."Zoey what do you see my love, is it beautiful, you make it seem so amazingly beautiful?"

Oh how I wish I could see what she sees

I'm jealous

She does this stim all throughout her day with a huge smile on her face, so I know that it is angelic whatever it is that she sees, it's heavenly to her. Seriously, who wouldn't want to see that. I have tried figuring it out for 2 years now and I never could, until just recently with the help of her new favorite song, music, ah yes, but of course.

Zoey and I jam out to music all day and night. Zoey is fast paced and she's not the kinda kid to sit in front of the TV, in fact when it's on, she actually shuts it off herself.  I love all kinds of music and so does Zoey.

Music by Carrie Underwood (See you Again) and Rascal Flatts, (My Wish) Beethoven's Moonlight Sonata, Michael Buble's song Lost, she loves Imagine Dragons, and she digs Elvis too. 

So I am never surprised when a particular song reaches her. She's had so many different types of therapies, but NOTHING has done for her what music has done for her. 

Zoey communicates through music and it's awesome. I love it because I love music too, it's our connection.

Recently I have been listening to a new band and she digs them a lot. She comes running from her room if I start playing The 21 pilots song Ride, not a little jog, I mean full on marathon speed because she does not want to miss this song. 

That's how the Beastie Boys were for me at her age, so I know how much she likes this band. 

I had their video on our TV via youtube and she sat and watched it, seriously, this kid doesn't do TV so I was shocked that she didn't try or even move to shut it off. She heard her song and she was watching them sing it on our TV

A very cool moment

I had never seen this video so I was into it too

Then I saw her stim

The video was dark and then went to a bright light, darkness to light

Zoey stood up and put her hand up in the air, she smiled huge as she gazed at her palm and then she closed her eyes, still smiling, she began to twirl and spin right where she stood...she was dancing, in her own way to her own beat as the music played.

I finally understand
I get it
I've been thinking too much about it

It's really just as simple as this, it's her pure joy and love for something.
Whenever things seem to go dark, she can find a way to see through to the light.

And to me, she is pure light! 

Her world is music, she is the lead singer, she wants to dance to her own beat to her favorite song...yeah, it's a beautiful thing to see her in her world and I'm taking my time here and so glad she let me in on her ride.

Wednesday, August 17, 2016

My life with complex PTSD

I don't take anything for granted when it comes to the "what ifs" in life. You know the "what ifs" right? 

Those "what ifs" are what keep you from sleeping, they keep you from enjoying your life, they keep you guarded, and in your mind they keep you safe, because you've had enough of those "what ifs" turn into "yeah that happened" moments and you're more than all set with having anymore. 

I am that person that the "what ifs" have control over and I wish they didn't but they do. 

I try to push them away in my mind when they start attacking me for thinking I can try something new or for dreaming about something I want, but the "what ifs" are strong willed like a toddler that wants what they want, and the "what ifs" want me to stay safe and guarded. 

They will show you just exactly what could happen if you don't listen to them. A constant slideshow of events in my mind, playing over and over again, the only thing is, there is no way to shut it off. It's on repeat and when I give in to the "what ifs" then that's when they'll push pause. They are fully prepared and ready to push play at their will. 

It's a constant battle with the "what ifs" in my mind. They push and bully the "but I can try" until it finally gives up and have agreed that the "what ifs" are right. 

The "what ifs" are sneaky and manipulative, they only want you to see their view, so they turn everything into impending doom or a catastrophe. 

It's scary and you believe them, you don't want to but your "what ifs" have never failed you before, because after all your  "what ifs" have turned into "yeah that happened" too many times for you to ignore them. 

The control my "what ifs" have over me is debilitating and I hate to admit that, because then that means they win. 

They've been in control for so long that I don't know how to live without them, but if I sit here and think about a life without them for too long, they'll be sure to reign me back in. 

That's my life with complex PTSD

Monday, August 15, 2016

The Land of Autism

I love hearing how "our life" has been an inspiration to some of you or how you can relate to a feeling or emotion I have as a mom, and I love hearing about all the different ways you all advocate. 

I follow a lot of blogs and I have noticed that they all differ on how they decide to show the world what their lives are like with autism. We all want to spread awareness for autism, I know that for a fact. We want inclusion for our children, we want needed services for our children, we want the same rights for your children and for our children. 

I'm a "newbie" in the land of autism and my child is very young. 

Those parents right now with older kids or adult children on the spectrum have definitely paved the way for "newbie" parents like myself. I wouldn't know half of what I know if it weren't for me seeing the stories of the autism "Vets" and what I didn't learn from them, I learned from autistics themselves. 

I remember that feeling of getting my child's diagnosis and all the emotions that came along with that. I also know what it's like to want answers from professionals and not get them, and to be sent on my way to this new land, the land of autism.

 I just want to learn as much as I can here so that I can set my child up to one day live alone in this land. 

When I got here I wanted to be accepted and taken in right away, but just like a new kid at school, not everyone accepts you. I get that! It's ok, we don't have to like everyone, but...

I sure as hell am going to teach my child that if she wants acceptance in this land that she has to accept all others here too. 

In this land there are differences of quirks, stims, functionings, and most of all there are the differences in opinions. 

isn't that what makes life in this land great? 

Our life with autism might not be like your life with autism, but it is not uncommon to find someone in our community that we can relate to. Whether your child is young, old, girl, boy, whether you're a parent, a self advocate or advocating for a loved one, we all live here! 

In this land your house may be bigger and you may have more friends at your parties, and if that's the case, good for you, you've done well for yourself. 

I'm just sitting here unpacking our stuff, settling in and getting us adjusted to our new life in our new land.

 It makes me kinda sad to see the long line of those who will also be joining us and moving in here too. I know how scary it can be to move to a new place, so I'll make sure to say "Hi" and "welcome" as they come on in.