A Few Things Every Autism Parent Should Remember Part 1

In the beginning of my new journey as a Mother to a Rainbow Rider, I often felt incredibly alone and lost. I was trying to navigate a land I knew nothing about without even so much as a compass.  I would stand tall and paint a smile on my face to show the world I was fearless but inside I was falling apart. I was the only Autism Mom I knew and the only people offering advice were the ones who understood the least. We focus so much on the health and well being of our children that it is so easy to forget that from time to time we need reassurance too. I've listed a few of the things I have picked up along the way. There is quite possibly hundreds or even thousands of encouraging words or advice someone could offer to an Autism Mom or Dad. These are the ones that took me forever to figure out, the ones I often still need to be reminded of. Maybe they can help or encourage someone else out there who could use a little push, a little truth, or a friendly reminder that you aren't alone.

  

Read this next statement. Read it over and over until you begin to believe it for yourself.  Your child's Autism is not your fault. You didn't do anything wrong. This is not God's way of punishing you for wrongs of the past, in fact it is the exact opposite. This journey is your gift. Your child is your miracle. You were chosen to raise them and protect their pure heart because you are capable and strong enough to do it. Make a decision now to let go of the guilt you have hidden deep within yourself. You are not to blame. You never were and you never will be.    It's not the coffee you had every once in a blue moon during pregnancy, it's not the medicine you took or the glass of wine you drank before knew you were carrying a child, it's not how old  or how young you were at their conception, it's not because of your parenting style, and it's absolutely not due to a lack of love and affection. It's not because of YOU. Autism is a neurological disorder that affects the "normal" functioning of the brain, the wiring, if you will. You didn't go into their heads and switch electrical pathways around. You didn't pick and choose while they were still in the womb which parts would develop and which would not. You did not CHOOSE this, and you damn sure did not DO this.

There are so many theories out there as to the cause of Autism. Some would even say "a spectrum" of possible causes. Whether you believe it is caused by vaccines, or too many vaccines too soon, the preservatives, or antibiotics, genetics, the environment, all of the above, or even none of the above, and anything else in between or not mentioned --- Even if there is truth to ANY of these you can not for one second be angry at yourself for not knowing. We do not have an entire team of researchers and a state of the art lab in our basement there is NO POSSIBLE way you could havetested these things to ensure their safety before giving them to your child. We are told these things are good, safe, and necessary. We are taught to trust... and unfortunately we don't learn to question these things until it's too late... but if the reason lies in bad medical advice, faulty research, or lack thereof that is THEIR guilt to carry, their sins to account for, it's not YOURS.

You do not own the weight of this guilt... Make the choice to let it go

For goodness sake, STOP saying sorry when your child's Autism and the symptoms associated make other people uncomfortable. When your child is having a meltdown and you can feel the glare of judgmental eyes burning little holes in your back don't ever turn to them and apologize. Screw them.  If you're in a room background noise and someone gets offended because your child is playing "too loud" do NOT apologize. Explain to them how even the slightest noise is

amplified in our children's minds because they don't process noise the same way we do. Kindly (or not so kindly) explain they are in fact not being rude or defiant, but instead they are attempting to adjust themselves to the environment as they perceive it, the best way they know how. If people don't get it, or choose not to that is not YOUR problem, it's theirs. When people judge you or your child THEY should be the ones apologizing for being pig headed and uneducated.

Look at it this way, you are doing them a favor. Exposing individuals to things that push them outside of their comfort zone offers a valuable learning experience. You are raising awareness in its most raw and unedited form. Screw sugar coating it. Meltdowns, sensory processing disorders, stimming --- they are all a part of Autism. One would never expect an individual who uses a wheelchair to apologize for being unable to walk, or expect the deaf to apologize for needing an interpreter. All disabilities whether visible or not SHOULD be accommodated and accepted. If someone has a problem with it or finds it offensive than its quite possible they have sensory issues of their own that need to be recognized.

Expanding on the above, if someone needs a little Autism education, by all means, give it to them. It's one level of ignorance to shoot judgmental stares at you but it's an entirely different level of appalling for a person to put those ignorant thoughts to words, especially in front of your child. This is the situation in which it would be absolutely acceptable to, in so many words or ways, tell them where they can shove it! If that response is too harsh for your nature you can choose to take the high road, explain, educate, advocate. But SAY SOMETHING!

Here is how I view it: If an adult makes the conscious decision to speak about my child, his behaviors, or anything else in his life that they know nothing about, this adult should fully expect  a response in whatever form it may come...and for me it doesn't always escape my lips as poised and calm as I'd like. But if an adult has the balls to bully my child this adult should expect to experience the full wrath of the Momma Bear who lives deep inside of me. 

It has been said that children learn by example. If this is true, which it is for my Rainbow Rider, than one can assume if children see the bullying behavior of adults go unnoticed they will learn that bullying bears no consequences, teaching them it's acceptable to be cruel to those who are different. In that same sense, if our Rainbow Riders, who are too often the target of bullying, see us back down or stay silent they will never learn to stand up for themselves. I'm not supporting for physical violence here, but I am supporting the use of our backbones. If the small verbal altercation between you and the adult bully prevents this Ass or the others who witness it from publicly targeting and embarrassing another innocent child than not only are you doing the Ass a service but also the entire community.

 Speak up, let them know it is not acceptable, not now, not ever and you will not allow it. Let them see that fire inside of you, you're a superwo-mom remember? Let your child see their protector standing up against what is cruel and wrong. And if you ever witness a Momma Bear in action make sure you give her a round of applause! It's not easy speaking up sometimes, but it damn sure is worth it!

This one is pretty difficult even if we secretly don't want to admit it. It is in our nature to compare everything. From the moment our children are born we compare them to the "standard", the milestones, the height and weight benchmarks, it's how we evaluate growth. So once it is established by comparison that our Rainbow Riders rate of growth or development doesn't match up with their neuro-typical peers, it is time to stop assessing the differences. Comparing the two are like comparing apples to oranges. Both are awesome, both are fruit, but both are different. I remember when my son wasn't hitting the developmental milestones that my friend's children were hitting. I'd never say it out loud but I found myself pushing my friends away because I was secretly so jealous. I hate admitting that, but it's my truth. It took me a while to find the peace in my son's individual progress. It's still something that I occasionally struggle with, not because I would want him to be anything other than who he is, but because things seem to come so much easier to others. It's hard to watch my son struggle with the same thing that comes to another child so naturally. When I find myself battling with those thoughts, I remind myself there are also things that come very easily to my son, much easier than they do even to me. The goal is to celebrate the uniqueness and be content with individual progress, not evaluate the differences with a negative frame of mind. The negativity that comparison breeds causes unneeded stress and children can feel that energy. So what if Tommy still needs visual supports for math? He can name all of the past presidents and their wives, and how many terms they served. And who cares if Sarah can't ride a bike yet? She can paint pictures that are so beautiful they belong in museums!

 Embrace the beauty and individuality. Celebrate the individual child's progress. Try not to focus so much on the data, the benchmarks, the "standard", and remember that true learning can't be displayed in number form --- it is only displayed by the child's level of understanding.

It's strange how many things you don't even realize you dream of until suddenly those things seem out of reach. I wouldn't even call them dreams really, more like expectations. Sure, everyone knows eventually Life will throw some curve balls your way, and we fully expect to just hop around them and get back on track. No one expects that curve ball will knock you and your child flat on your tails and when you stand back up you both are on a completely different road altogether. 

You know Life should really consider putting a welcome sign up and maybe one of those big illuminated maps with the "you are here" star. It would make things so much less confusing. But she is known to be a bitch like that and even if you don't get knocked off of the "normal" road, maps and how-to guides aren't really her thing. So what now? What is the next step? Well, I guess this is the point where different parents will make different choices based on what's right for their family.

But I'll tell you what we did... I spent way too much time trying to get back to my old familiar road. We moved forward and back a bit, we collaborated with various experts promised to know how to build the perfect bridge. So, we got to work, day in and day out, we were making progress but the old familiar road was moving further away everyday, or maybe the new road was the one moving... I don't know, either way we began to realize that old familiar road just might not be in our reach. We decided to take a break from bridge building, give the experts a change to reassess their construction plans, give my little one a chance to rest. He had the biggest job to do in the bridge building process and it was taking its toll on him. During those relaxation days I watched as my son twirled and flapped around dancing in an array of colors. I saw him smile and laugh. I was beginning to see him in all of his beauty, the rainbow colors reflecting from his eyes. I decided then that the old familiar road could move as far away as it wanted to, that my son and I were done with bridge building, that we were going to play in the rainbows for a while... So we played, laughed, danced and my son showed me new and unique things everyday. He knew his way around this place, almost like he'd been there much longer than I had... After spending some time just enjoying the ride, my little guy pointed out to me that the old familiar road was moving closer... much closer than it had ever been. Everyday it kept moving until it moved right over top of our new Rainbow Road, running parallel with us but still just slightly out of reach. I knew if we wanted to reach it we could this time. But, I was kind of enjoying the ride from where we were, from my son's rainbow. If he ever wants to venture over and check out the old familiar road he will... I know for certain he will end up on whatever road is perfectly designed for him.... and I will be there with him, always. The old familiar road was my "normal" and it was never meant for me to keep, the Rainbow is my little boy, this rainbow journey with him...that was always meant to be my destiny.

So... What I'm saying is jump on, accept the new journey, you just might find you're meant to be there too! And let yourself enjoy this new and exciting road you and your child are on.

and this is only part 1...



Enjoying the view through his eyes



When I gave birth to my sweet boy I was young and in many ways so very unprepared for life as a mom. I was 20 years young, wild, carefree, and in some ways incredibly reckless. Until I discovered I was pregnant, the only things I concerned myself with were trivial and meaningless. I was enjoying life in the fast line, living with no regard to tomorrow. It took an unexpected pregnancy for me to really re-evaluate my life.

I stared into my newborn son's beautiful eyes. I remember thinking how amazingly big they were. I knew even then that those eyes were meant to see the world in a different light.
Fast forward 2 years, many ups and downs, and a lot of learning later. I was almost completely done with my training as a Medic and my little one was getting bigger. We had already started the screening process for developmental delays and were waiting for answers. I knew something was different about my boy, he didn't smile much, he wasn't talking, he didn't laugh, and even though he had a room overflowing with all the latest and greatest toys he only played with his one small plastic giraffe.
I didn't know what it meant when they first said he might be Autistic and needed an evaluation. I spent hours in front of my computer researching, learning, absorbing all of this terrifying information. The more I read the more my heart broke for him, for us. I prayed they were wrong. I prayed he
would just wake up with an entire vocabulary, smiling, laughing, interacting, that he would just suddenly become "normal". I'm not proud of that ignorance, but at the time I didn't know any better.
 Months of testing and evaluations went by and one day the Neurologist finally said to me "He has low functioning Autism", but I already knew that. I wasn't sad, I wasn't relieved to finally have an answer, I was just numb.
I am a "fixer" by nature. This very character trait is what made me such a good Medic. I assessed problems, diagnosed the cause, and treated accordingly... very black and white. So once the diagnosis came I went into "move it or lose it" mode. Things moved fast, mainly because I wouldn't rest until I diagnosed the "cause", the reason. I obsessed about it! Because every condition, if diagnosed correctly, has a successful treatment, right? If I could just pinpoint the cause I could fix this, right? WRONG! In the back of an ambulance, sure, this rule applies to 99%
of things we encounter, but when it came to Autism I couldn't have been more wrong.
I jumped on every theory for the "cause" that I could find. I put on my medic hat and researched them all until I was either convinced they were possible or  convinced they were totally bogus. He started receiving home based speech therapy. He began early intervention and was going to school every day. We implemented the gluten free casein free diet, not just for him, for the entire house. He started occupational therapy. IEP's were written, goals made and assessed, I transformed into advocate Mom. We were in"treatment" mode and even with as exhausted as we both were, I kept going, I made him keep going. We lived, no "lived" is not the correct word, we FUNCTIONED like this for 3 more years.
He made progress, much more than they ever said he would. He was blowing the medical professionals away with his incredible intelligence in specific areas like history, but was still extremely delayed in others. It was a win-lose battle. His strengths were STRONG and his weaknesses were very weak. He was still the odd-man out on the playground. He didn't have very many friends. But he was trying, so very hard. Progress, even in the smallest form... you would think that would be enough. But it wasn't, we weren't happy. Exhausted, sleep deprived, emotionally drained... both of us. I pushed and pushed and pushed and secretly wondered if he would one day hate me for making him work so hard.
Throughout all of this time his Dad and I were not together anymore, I established myself in the Emergency Medical Services world and had my career stripped away from me by cancer, at just 23. I underwent radical surgeries to save my life but at the cost of my dream. Life had been unkind to the both of us. Guilt would creep into my mind in the darkness of night. I'd sob and beg God for an answer, why were our lives so hard? I would scream into my pillow and surrender myself to those overwhelming emotions that I kept hidden in front of other people. I would break. And I wondered if in the darkness of his room he was doing the same thing.

And then it happened...
One day something hit me, something I knew all along but could never wrap my head around. Looking back, I realize this epiphany was the answer to my many prayers. I just realized, FINALLY, that no amount of therapy or interventions would ever take the Autism away from him. And for the first time in his life, I was ok with that.
And for the first time in his life, I experienced the beauty of his world, the rainbow, all of its magic and color. From then on, I tried everyday to see the world as he does. I made a silent promise to never try to pull him out of that beauty again.
The less I pushed the more he learned, the more we connected, the happier he was. I was finally getting to know him, his quirkiness, his uniqueness, the pureness of his heart. He understood something that it took me much longer to finally get --- there is beauty in difference, enlightenment in understanding, and answers to prayers. Even the darkness of night can't stop the stars from shining. We don't have to do anything, we don't have to make the stars shine, they do it perfectly on their own. And if we can't see it from where we are standing, it's up to us to adjust our view. The same is true for our Rainbow Riders. In the process of intervention don't be blinded to their inner light. Don't try to change the unique beauty of their world. Show them that even if the rest of the world never sees it, you do, and always let them know how amazing they truly are. And if we as parents believe this deep within our souls, they will too!

This is how I ended up as a passenger on his rainbow. I must say since jumping on board life is much kinder, the air sweeter, the view is more than amazing. I am happy with where we are in our lives. And he is happy.... genuinely happy.
This doesn't mean I don't fight for his rights, it doesn't mean we gave up on therapy completely. He still needs the extra help. It means my priority for him is first and foremost just being a kid, and doing what kids do, and the rest falls into place after that. There's a delicate balance in finding what amount of intervention is right for an individual child, but I have found that if I just ask him, he is happy to let me know.

I will leave you with this quote-
I was in he movie theater the first time I heard it and I couldn't help but cry. I'm sure the people in the seats beside me thought I was insane.

"Yes! Big eyes, very big, because they are full of wonder. That is my center. It is what I was born with, eyes that have only seen the wonder in everything! Eyes that see lights in the trees and magic in the air. This wonder is what I put into the world..." -North, Rise of the Guardians

 

And this is the wonder our Rainbow Riders bring into the world! Imagine if we could see through their eyes for just one day, all that we could learn from them. It certainly is a beautiful thought...

What is this thing you call "normal"?

What exactly does it mean to be "normal"?

Oh how I love and hate this word. Hate it because for some reason it's become socially unacceptable to not want a "normal" life and love it because it summarizes everything I don't want to be. 
 I often wonder why some become so fixated on being just like everyone else. Why is there so much anxiety, hesitation, or downright fear when quirky, unique traits poke their way through the "normal" façade we try to desperately to wear? I must admit though, I was there, trying so desperately to squeeze into the tiny little box of "normal". 

"Mom's aren't supposed to wear this or that, they definitely don't have tattoos, maybe I should cut my hair shorter, PTA? Oh yes, I definitely have to join that - all of the other moms do..." It's exhausting!

Now let's take this a step further from "normal" mommy's to "normal" kids. My Rainbow Rider has spent his entire little life perfecting the art of being anything BUT normal. After years of trying to over-therapy and over-think him to fit into that little box of normal, I realized that normal sucks! 

 

Let's think about this logically....

Webster's definition of normal: conforming to a type, standard, or regular pattern
Synonyms: usual, common place, ordinary, average, unexceptional, unremarkable
Related Words: regular, typical, homely, plain, insignificant, unimportant, expected and predictable
 

I'll sum all of that up for you... BORING! 

Conforming to a type- Ok so this isn't always bad right?

Conformity is, very simply put, abiding by a pre-set standard. Rules, expectations, guidelines by which we live... in the purest form these are necessary for society to function smoothly. Note that I said in the purest form...
Then we have the conformity which led people to silently watch or, even worse, actively participate in unthinkable crimes against mankind. For example - the persecution, mass murder, horrible treatment and torture of those with Jewish heritage in Germany, initiated by Adolf Hitler, executed mainly by the conformists.
There's also the conformity which leads kids to think drinking is cool or drugs are fun. There's the kind that makes people think it's acceptable to look down on the people who are different, people with disabilities, those who think differently, who don't wear the trendiest clothes, those who don't look, think, talk, and act just like everyone else... the nonconformists.

Conformity in some ways is necessary, but when it comes to other circumstances it can be devastating. Ultimately, the choice is ours to make individually pertaining to what is right or wrong, good or bad, which sets of guidelines we choose to conform to.

It is my sincere belief that the only instance in which we should teach our children it is good to conform to societal standards is when it is morally the right thing to do and doesn't compromise our own integrity.

 

 

 

Let's move on to the synonyms- Usual, common place, ordinary, average, unexceptional, unremarkable

I don't know about all of you but these are not things I would ever purposely teach my child to be. I can't think of anyone who would say "Gee guys! I wish I could be unremarkable like Joe Schmo." or "Hey Jane, have you noticed how common place little Bo has become, he's really making progress". I wouldn't allow anyone to write a new goal to my Rainbow Rider's IEP that said "Successfully be unexceptional in 8 out of 10 attempts"....and I think it's safe to assume, neither would you.

Related Words-Regular, typical, homely, plain, insignificant, unimportant, expected and predictable

Translated: BORING, even MORE boring, blah, blah blah!
Insignificant and unimportant, don't we teach our children to be the exact opposite of this?



Based on the definition alone do you see how much "normal" sucks?
If being normal means being all of these things than one can assume to live normal would be to live an unexceptional, unremarkable, insignificant life. That's definitely not something I'd want in my obituary...

"Finger Flippin Mom passed away Tuesday evening, she was 86 years old. She did nothing exceptional in her life and was quite unremarkable. She lived a standard, unimportant, and predictable life and will be missed by all those who love her. She is preceded in death by her husband who passed 5 years ago of chronic boredom. There is no memorial service in her honor because, even in death, she is uneventful."

Ok, all joking aside, when we understand what "being normal" really means it's pretty easy to say we want to be anything but! Applying this to our lives is a little more difficult.

It is natural  to pray for some sort of normalcy for our children who seem to live in a land so foreign to us. We don't get it, we have never been to this place, and its easy to obsess about pulling them into our reality - our normal. But maybe our reality is much too simple for their beautiful minds. Maybe their brains were wired differently from ours for a purpose that we, in our simple reality, could never understand. Perhaps we will never know, but that is a side effect of living in a normal world, we can't fully understand that which we do not experience. But what we do know is that it is perfectly ok and, in fact, encouraged to be different. Let's not stop there though! Let's teach our children to be extraordinary!

Let's teach our children and believe it ourselves:
Don't be normal! Be the opposite of normal!

Be YOU!

 

 

 

Tomorrow I will begin the story of our journey from diagnosis to when I threw my middle fingers up to "normal" and everything in between! Until then...

 

 

 

 

 

 



In closing I'd like to make note that I believe in the benefits of therapies for autism. My son receives them, he has for 5 years now. He's made tremendous gains because of them. I know that every Autistic child is different and what works for one may not work for the next. I am not anti-intervention, I am not anti-therapy, and I am certainly not anti-progress. I am against changing the core of the person in order to make them more easily accepted by society. I am against squeezing them into that tiny box we call "normal" and forcing them to live there. We each may not agree on all things, and that is ok. That is the beauty of being different, we all can have our beliefs and opinions while respecting those of others. This is merely a representation of MY beliefs and those I have acquired through much trial and error.

Being A Modern Day Superwo-MOM

Hello out there!

Since this is my FIRST blog please allow me to introduce myself,

I am a SUPERWO-MOM

 

You may be wondering what in the hell that is exactly... I will elaborate: I am an all or nothing, fight to the finish, never give up, and never back down BAD ASS Autism Mom.

I am an unconditional love-giver, an always have your back protector, a voice of reason, a voice of understanding in a world that isn't at all. I am translator for the adults who have not mastered how to communicate with a child. I am tired, no exhausted! But I keep going, because if I don't, who else will? I am the bearer of the "magical kisses" which have the power to heal wounds of the physical and emotional kind. I play hard, I work hard, I love even harder. I am the bad guy when I need to be, but the fun guy most often. I am the teacher, the tutor, the explainer of all of the things. I am the student, the open minded learner because my Autistic son has taught me more than I could ever teach him.

I am a Googling SENSATION, given 20 minutes and Internet access I can find the answer to most any question, as well as data and peer reviewed research to support the conclusion. I am an advocate. I am that "bitch" mom teachers and administrators love to hate. And I am completely content with holding that title because I know if it were their child,they'd be bitches too!
I am in complete awe of my children, both of them. I love them more than the air, more than the sky, more than my life. They are the reason my heart beats...
I am a MOTHER to an autistic child, a rainbow rider. I am a MOTHER to a "neuro-typical" son (or whatever the new politically correct term for it is). And if you are here because you have a child riding down Rainbow road with mine than...

I am you

You are me

We are one in the same

"Autism Moms- A sisterhood of complete strangers who will bring you a bottle of wine as they join you in a street fight...Because we get it!" -Unknown      

This blog is my story, my experiences while riding this crazy roller coaster of intense colors. This is the uncensored truth as I see it, whether anyone else likes it or not. This is the journey of how I evolved from the Mom who used to care way too much to the Mom who will smile while telling the judgmental pricks to go screw themselves. 

I hope you stick around. I hope something I have experienced or something I write can strike something deep inside of you and remind you that YOU are also a...

 

SUPERWO-MOM