My tribe is strong and kind.
My tribe is real with humility.
My tribe sees beauty in all things.
My tribe is raw with respect.
My tribe understands the power of dreams.
My tribe beats with one heart.
My tribe is different not less…
I can honestly say that even though I have a good outlook on life and faith in my heart I wish for things to change… No I’m not wishing to change my child at all. But there are things I wish to change like… I wish I didn’t work full time and could be with her more. I wish I didn’t have all these bills that have somehow piled high. I wish that today was sunny and I wouldn’t get burnt to a crisp because lets face it I’m a pale freckle faced red head and turning into a lobster is easy for me.
Just because I have a disabled child doesn’t mean I’m different in any way that is bad. It might make the way I see things in life a little different but just like my daughter with her autism and other medical challenges we are both different not less. I find that when people talk to me in public it’s different when it’s just me.. add my kick ass kid to the mix and BAM! WOW wow the “egg shell” effect has taken over. But why!!???
I’ve been called lots of things in my life due to my hair color (teased like crazy, bullies suck) and I have been through a lot. I used to hang out with a lot of different crowds growing up and my parents divorced when I was about 12 ish… let’s just say my soul and heart have felt broken plenty of times. And yeah when I got the news towards the end of my pregnancy that McKinley would come with a life full of obstacles I had a melt down and questioned life and god.
I have had a lot of ups and downs in life, most people have. We are not all born into a life of riches and laughter every day. Some of us have to make the right choices from the get go and then the curtains of life open and we get what we want because… drum roll… we earned it. But no one should ever have to feel like they “earned” immediate judgement because they were born to shine differently than their neighbor.
I remember being little and wanting to dye my hair every day! Gosh the horror!!! It took me years to get over that and it built up a fire in my soul that made me strong.. sometimes I was even mean back. And now I’m older and my best friend who is also a hair dresser loves to cut my hair and tell me how happy she is that I NEVER did that. I even let her cut off 19 inches last time and we sent it off to wigs for kids. We have friendship tattoos…
She has -To infinity- I have -and Beyond-…
Back to my story of my tribe and not my posse (that is a whole different story full of life, I’ll share it with you someday I promise.)….
I think it’s always going to be harder on parents like me because of the people who are ignorant, if that makes me sound bad for saying that I’m sorry. It’s harder to go to a grocery store, Eating out is almost not even something we can do. Going to public events is cray cray (as my 10 year old would say) But I try to do things now while she is small because I feel like that is the best time to get out.
Right now we have it easier than we may in the future, but I still do not know for sure. I can not predict the future or say this will or wont happen for her. There are so many kids with stories that I have read that have inspired me, kids that never talk that are now graduating college! There is magic in life everyday it happens to anyone and as a parent I have to have faith and believe in my daughter no matter what.
I do know that getting her out and doing things now is easier because we can put her in a hiking backpack and just go… she will outgrow that someday. Right now we can move around in life with her easier while she is little and she is easier accepted by those super awesome ignorant folks because she is so young. That is hard for me, to know that acceptance is such an issue in this world.
I shared the story of how McKinley grabbed a mans cell phone out of his hands one day… we were on the sidelines watching Savannah’s soccer game and well she saw the phone and ran for it and was like a ninja, grabbed it and went for youtube. His reaction was oh hey there cute little one followed by laughter. Now had she been older and still with the obsession of buttons and phones this could have been different.
I know one thing is a huge factor with “special needs parents” we want to live forever and protect. But I think if I could do anything besides protect it would be to change the hearts of others and allow them to pursue a life of acceptance for all. We are all created to be here and alive and well and to be happy. We all deserve a chance to walk in the light of others and be accepted for who we are.
I have a few friends who have kids with medical issues as well. Some of them even have kids who are autistic and one thing we all have in common is we love our kids unconditionally and wouldn’t change them for any amount of anything ever. We know that this is our life as a parent, we were not chosen… we are just being good parents.
My tribe is my life. I’m all about family and this is my family. They are the ones I will put first and I will at times forget about me within that, being a mom can do that to anyone. I will always help them pursue their dreams. Even my other leader, my husband. I will push them to be adventurous and help them heal when they feel “broken”. I will help them understand this world around them the best that I can.
I will always wish for this world to understand my tribe better. Acceptance is huge for anyone, it does not matter if they have a medical condition or a brain injury or anything… being accepted shouldn’t be something we have to fight for. We are here and we are alive and that should be enough…
With the exception of my extended family and close friends… I have a hard time dealing with talking to people about McKinley and her medical struggles when they “pity” her or they cross their arms and are standoffish… I can’t even count the many times I have heard things like..”Oh I’m so sorry!” ..”Do you think she will ever be able to even say mom?” … and the list goes on, I will not continue it’s freaking long. I’m ok with talking to some people about those things honestly it helps me be able to get things off my chest and just talk to people who I have in my circle or my posse.
But when people expect me to explain why she is drooling on herself and throwing her toy randomly or humming whatever darn tune she wants.. I don’t feel the need to continue that with them. I would rather high five them and throw them off and say “Peace out!” or give them an awkward smile and walk away. It doesn’t matter if my daughter doesn’t make eye contact with you, or if she doesn’t respond “correctly”… what matters is I have to be a parent and set an example..
No my child may not be able to say “good job mommy” but she will look at me and that one look is all I need. She knows love. She knows when others are upset. And get this folks she can feel. WOW being Autistic is bottom line different NOT LESS! It will never make me want to wish away her differences in life. I have had to adjust to being a parent and understand her just like any other parent out there… my story is different it’s not less than yours. Be a good person please and stop looking down on others for their life differences it will change the world a little at a time.
Like I have said plenty of times… I can not just throat punch the idiots that piss me off, I have to be strong inside and for myself (cant go to jail duh) IDGAF about your 21 questions. I give a lot of fruits about my tribe though and away I go….
I love positive vibes always!!!!!
So much that I’m going to see Jason Mraz positive vibes tour w/ Brett Dennan when he comes here in September!
Can I get a fist pump! Bam!
(I get a moms night out! Gonna be wild folks!lol)
How do you pursue a life of raising your tribe right?
Any ideas on a good ASD friendly outing?
Any positive feedback on good ABA tools?
Any Advice at all I always appreciate…..