The Wonderful World of Autism

I’m always reminded of that amazing short story entitled “Welcome to Holland” every time I ponder the last nearly 8 years of my life that I have been raising an autistic angel.
To summarize it: The plans were thought to be traveling to Italy but your plane landed in Holland, so basically now you have embarked on a completely different experience. With no prior guidebooks, converted money, Rosetta stone cram session of the new language, or different clothes needed for the weather packed ready to go on the new journey and destination.

“But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss…

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”

Is life the way I always thought it would be? No.
Of course not since having a special needs child is not a usual assumption and sometimes can be rare given the condition, and why it even occurs remains unknown or “to be determined” later in this day and age despite the best technology. One can only assume that what is meant to be will be….

I must say that the new reality of getting to live in an expanded world that my son’s eyes/mind has shown me does indeed bring the most happiness than ever imagined. Yes, and that is how I always knew my life would be. It may not look, sound, or feel the same as the average mom/family, but the strength developed from getting through the bad days makes the good days shine even more brilliantly. I’m thankful for my patient tour guide Lincoln to have helped me navigate through this new world. Grateful also that I am filled with a great sense of wanderlust adoring travel.

“The world is a book and those who do not travel read only one page.”
~St. Augustine

Kingsley, P. “Welcome to Holland”  (retrieved from http://www.child-autism-parent-cafe.com/welcome-to-holland.html)

An Autism accomplishment!

Today I am absolutely elated and just Had to share what finally made a BIG difference in my sweet autistic son and our battle with compliance!

Lately upon taking him to various therapies I started to really pay attention to all the techniques used to teach him, but also now teach myself on how I need to enforce the lacking discipline since I get so overwhelmed at times…
Cooperation and transitions are probably one of the toughest things about raising a child on the autism spectrum because the simplest of tasks like eating for example can become World War III, and normally I cave in and am a big pushover since I hate seeing him scream and hyperventilate to the point of nearly vomiting.

Instead of merely taking him to his therapies and enjoying the break of not having to be the “bad guy” for a lovely hour each appointment I started taking tangible and mental notes. At his last IEP meeting (which stands for Individualized Educational Plan for those of you who are not familiar) I took advantage of having the extra One on One time with his teachers and therapists getting to have in depth talks plus finally had my mom come with me (since I have gone alone to every single one since he started school @3 years old). These meeting can be very daunting and overwhelming as you are bombarded by information that sometimes can be hard to swallow about your child’s progress or lack thereof.

A particular method for ASD kids is using the Picture Exchange system, and I kept meaning to give it a real shot by taking pictures of his preferred toys and un-preferred toys (as in ones he “stims” with and also ones that he refuses to play with functionally), laminating them, and velcro-ing them to the front of a sealed container so that in order to get their needs satisfied the photo must be brought as a way of asking (especially if they are non verbal as my sweet Lincoln was, But he Is learning now!). With the items tucked safely away acknowledgement must be made to express their wants instead of merely taking it without any communication.

Further using this method you make a “First, Then” board to adhere velcro laminated requests such as “Sit on the potty” “Eat at table” “Brush teeth” and other things that for every day life can be an insanely difficult battle for the slightest bit of compliance.

Well today I finished the task of having everything good to go so once he got home from school and asked for his balls (his preferred stim to bounce repetitively) I used the “First, Then” board to say “First eat at table- Then balls”…. Clearly this was met with a huge tantrum; however I refused to cave. He asked for a food I have had to take out of his paltry diet as after comprehensive allergy and GI testing found out he is allergic to, so I had him pick a healthy snack then enforced visually with the board what was GOING to happen. Tears, tears, tears, and more tears- But guess what…? He eventually complied!! VICTORY!!

That is the Goal- communication of any sorts whether verbal or non verbal.

It may seem silly, simple, or meaningless -But to me this was a gigantic step forward for him, and also for me since I refuse to not be taken seriously anymore. Not by anyone and especially not with my own son (since having him 6 and a half days a week virtually makes me a single parent).

Hope– real Hope happened today and after his tears of upset dried then the tears of happiness rolled down my smiling cheeks beamingly proud!

Wash it Away

I’ve heard the quote: “Sometimes we expect more from others because we would be willing to do that much for them.” -And that definitely is one cold hard fact.

Why does it hurt to care so much? I try to not have expectations, but it is So hard at times to not let that glimmer of hope shine in your head. Unfortunately then you can set yourself up for that Dreadful world of Disappointment. I truly hate to sound negative ever, but I made a stupid mistake allowing myself to be let down when my goal of fund-raising was not met ($500) for the walk I organized for #AutismSpeaks in my son Lincoln’s name.

My own family didn’t even show up- only 5 people did.

 I would be there in a heartbeat for anyone/anything. You name it. I’m there- unless there is a really good reason I couldn’t like sickness for example. I go to their kids birthday parties, their charity walks, birthdays, or anniversary celebrations. I donate every time when asked at the checkout market even if the charity is Special needs, and I obviously have a Special needs child myself for goodness sake! Cry me a river you are probably thinking right now reading this, but my point was that I must ask this question: How can there not be hurt caused by the lack of care from close friends and family? Many said they would show support by being there or at least donating yet only a couple actually did.

The subject of #autismAwareness is something that I am SO passionate about, so anyone who knows me in the slightest bit knows how my heart is completely attached because of my sweet son.  I truly appreciated all the love that was shown and of course would not have canceled it even if it were just Lincoln and I that showed up. But I’d be lying if I said it didn’t send pangs of sadness deep in my belly. For me in my little silly world it felt like a crushing blow. The goal was short by $45, and I cannot kick in anymore so it will end within the month uncompleted when in all actuality it was just unsupported.

My posts are always wrapped up with bows made from silver lined sentiments, but I am having trouble fastening one on tonight.
Spewing out my thoughts helped immensely since I obviously will not feel this way long, but it might finally teach me a lesson the aforementioned quote touched on that:
|People are not going to care the way you care| No one will ever necessarily think the way you think| If you or your family are not personally affected then importance is not placed|

I guess that is just being a “realist” about things instead of my usual off-beat illogically feeling line of thinking. There is no point in holding on to any of this though as it serves no purpose for truly bettering oneself.

Like how one of my all time favorite quote says:

“Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned.”

~Buddha

 I don’t enjoy being burned and I would assume it is safe to say that many of you do not as well.

So throw water over that fire, and after putting it out Completely walk away….

Leave the rest and only take the best onto the next endeavor.

 

Love/Devotion personified

Can you imagine if the love of your life could not express what he was feeling? No matter how desperately you tried if he is injured, sick, or in pain he would still be unable to communicate that to you…

Welcome to my life being an Autism single Mama!

Well let me tell you that it is one of the most helpless feelings in the entire universe. Being his Mama, protector, advocate, and vigilante if needed can sometimes be a heavy load when you are carrying it alone. For instance recently I took my son to have a gastrointestinal surgery (studies are showing there seems to be an alarmingly high correlation of ASD and GI issues) with no one else there for moral support.
Having to be the fifth person holding him down while anesthesia was being administered I stroked his face while he was screaming and kept saying repeatedly while choking through tears myself that “Everything is going to be ok”, but I wondered is it going to be?
Watching his body go limp then traumatically see him fall as if he died in my arms shattered me to the very core of my being. Instantly the nurses whisked me away as I sat alone in the waiting room sobbing hysterically. It is still so vivid in my mind it brings tears to my eyes now just writing this….

These are some of the things that parents of special needs children do NOT want to talk about. Maybe by choosing to ignore and not acknowledge reality seems easier. Hiding behind a facade instead of facing the insurmountable fears.

SO here is some cut to the core brutal fearless honesty:

• We worry that their social skills may not eventually improve enough for them to have real friendships with other children and adults.
• We are petrified that upon becoming adults themselves they will still need full-time care, and then we may have to face the atrociously difficult decision of potentially putting them into an adult group home.
•  We sometimes fear what our children’s futures will be like, and worry whether or not other complications will arise.
•  The thought of still changing diapers as a teenager can easily throw a harrowing wrench into the everyday optimism that is vitally crucial to maintain homeostasis.
•  We are sometimes afraid that the many things we dreamed of and still dream for our children they may never get to experience; i.e. participating in a sports team, successful careers, getting married, having children of their own, and depending where they are on the spectrum basic things like carrying on a conversation with eye contact is not necessarily going to be reality. 

I will openly (and quite rawly) admit that I have cried into a pillow disheartened when I got negative reports from his therapists and teachers at school that tested his communicative skills to be on a 2-3 year old level (when he is turning 8 soon). 

Having full meaningful conversations where you are able to hear your child’s actual thoughts is such a gift I think many parents do not even realize they have.

During the day I imagine and even in my subconscious mind’s eye nightly dream about the day when a simple question of “How are you?” will be answered. I want so badly for him to have everything possible to continue bolstering the growth and advancement of his already extraordinary life. My son is my entire soul, heart, and life. There should not just be one month to promote #autismawareness since the rates just continue soaring and there are still NO definitive answers as to why. Many theories exist but there is no proven explanation yet. This needs to change. Now don’t get me wrong- the seemingly cliche’ statement of “I wouldn’t change him for the world” is my wholehearted sentiment without a shred of doubt. He has taught me so many invaluable lessons about life, sacrifice, and an unbelievable perspective of true love and living. Without him I wouldn’t be the woman I am today. That is priceless. Beyond words.

So thank you my sweet boy Lincoln… I could never imagine life without you and pray to God that I never have to.

 

Autism Irony

Many times I hear such amazingly sweet and meaningful words that touch me  to my core and deservedly a beaming smile flashes in my eyes and across my face. Truthfully though I find this rather difficult quite often, so instead I tend to half smile hiding tears that start to well up in my tear ducts. The kindness is shrugged off instead of reflectively and rightfully having it be sunken into my heart.
Why…? Well unfortunately I suffer from these agonizing feelings that I should be doing MORE! MORE! MORE!

No matter how many Doctor’s and Specialist appointments, IEP meetings with his teachers and therapists, ongoing new treatments, current evaluations, new behavior analyst tests, and then of course painstakingly long and semi difficult research I do desperately in the hopes of finding any ways I can to help improve the sweet love of my life- I still always feel like my best just isn’t nearly anywhere good enough….
Many times though I hear some phrases that do not get anywhere remotely close to my heart strings, in fact can inadvertently be semi hurtful….
Such as:

1. “HOW do you do it?! I could never!”
2. “He is still in diapers at almost 7? My son potty trained at 2- Have you tried giving him M&M’s?”
3. “God only gives special needs children to people who are strong enough”

So to answer those questions….

1. How do I do it? Well what other choice do I have? I certainly cannot push him back up the birth canal! Those episiotomy scars long healed- Thank you very much! And trust me natural child birth was plenty of enough trauma there!
2. Yes he is 7 years old and refusing to potty train… M&M’s you say? OHMYGOODNESS I had never heard of such a brilliant idea!? Bribing my son with sugar in the hopes of compliance for him to “normally” have a bodily function? Well someone alert the media there is a new groundbreaking ideological theory!
3. God “chose” me to have a son with a severe neurological condition to prove how strong I am? *Not to get into a religious debate as I know my Bible cover to cover*-But what am I his servant Job being tested to the max? I’m sorry but why on earth would a loving God want to single me out to face obstacles that bring me to my knees constantly and make me feel like I’m drowning in a puddle of my own tears?

Before you chastise my answers that may seem to have negative undertones I just strongly encourage everyone no matter their circumstance may be to just drop the mask every now and again and let yourself free from the self judgement you impose on yourself and the fear of being judged by others. Open up, Clear out, and Vent!
Try it!! It’s refreshingly therapeutic and even funny to read back over your tiny rant and giggle knowing that it’s not actually how you truly feel! Just sometimes your back breaks a bit, the walls start to cave in, and suddenly you find yourself wanting to meltdown on the ground like your little guy or gal on the autism spectrum.

And you know what I’ve realized….? IT’S OK…!
Even Mother Teresa probably had bad days too where I’m sure she might have rolled her eyes at certain people’s comments!

Let it Out and Let it GO! Otherwise you’ll just be a ticking time bomb awaiting either a padded room or a jail cell. 

Yay it is finally Autism Awareness month!!

Oh how I wish everyone shared my immeasurably boundless passion to spread awareness and funding! I am writing this post now in an effort to reach out to whoever in this great big wonderful universe who might want to band together to see the soaring rates of autism decrease.

Did you know …

• Autism now affects 1 in 68 children and 1 in 42 boys
• Autism prevalence figures are growing
• Autism is the fastest-growing developmental disorder in the U.S.
• Autism costs a family $60,000 a year on average
• Boys are nearly five times more likely than girls to have autism
• There is no medical detection or cure for autism

National Institutes of Health Funds Allocation

• Total 2012 NIH budget: $30.86 billion
• Of this, only $169 million goes directly to autism research. This represents 0.55% of total NIH funding.

• More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined.
  (https://www.autismspeaks.org/what-autism/facts-about-autism)
  Close to 50% of the money raised for Autism Speaks comes from the Walk Now for Autism Speaks events. Walk events not only generate vital funds for autism research, but also raises crucial awareness about autism on the local level.

  If at all possible please join my team “Walking for Lincoln” even if you cannot walk as the event is this Saturday April 11th in St. Petersburg Florida. You can still make a donation that will directly go towards the incredibly needed funding for research and the services they graciously provide for families in need.
  http://www.walknowforautismspeaks.org/tampa/walkingforlincoln

  My son does not have a voice to advocate for his disability so I am his voice- and I will not stop trying my best every single day to help him be the very best possible Lincoln he can be. I am also making neat crafts to sell and either list on Ebay or Etsy and then donate the proceeds to Autism Speaks (https://instagram.com/p/09LK9YxW0S/). If you are interested please comment below and thank you from the bottom of my heart for taking the time to read this~ Much love from Arielle & Lincoln

  Every little bit of Awareness matters!

  

  The Love of my Life

My Son~ My Sunshine

I never could have imagined how motherhood would change my life completely…. Never.
I was petrified every day scared out of my mind as having a high risk pregnancy I could have lost my sweet boy Lincoln at any time due to SUA and an umbilical cord insertion issue. After 30 weeks of gestation I had to drive 1 hour round trip twice a week to the hospital for monitoring and testing while working a full-time stressful job being a certified pharmacy technician. Always by myself to each and every appointment as I had a very unsupportive/abusive ex…. in fact the first time he hit me was when I was pregnant.

But on May 14th 2008 at 1:45 in the morning my Angel was brought into the world. I will Never forget every single ounce of pain from natural childbirth but also how it immediately vanished the moment they laid him on my bare chest. I kept saying “Ohmygod, Ohmygod, Ohmygod!”~
Tears flooded down my face and that instant overpowering love was truly the most momentous occasion in my entire life. The astounding immense love I felt for him border-lined on post partum psychosis as I was up every 2 hours breastfeeding him but in-between those hours instead of sleeping I found myself constantly checking on him, putting my hand on his belly to make sure it was still rising, and carefully having a finger under his nose to make sure he was still breathing. Phew talk about temporary insanity!

I wouldn’t change the grey hairs I immediately started growing within a months time of becoming a mother. I wouldn’t change the stretch marks and tarnished stomach because without those “mama war wounds” then I wouldn’t have the unbelievable love and shining light that he glows every day!

Some days are harder than others to maintain all the positive energy that I aspire to keep in our lives. It is an uphill battle to put the so-called “oxygen mask on yourself first” when ALL you want to do is use every ounce of strength for your child (especially since my son is fairly non verbal ASD, so I HAVE to be his voice)! People have asked me if I could go back in time and not have had this pregnancy would I…? To them I try to refrain from shouting HELL NO! Unless you have experienced the joys/struggles of being a special needs parents then you truly do not understand, and that lacking perspective can only be gained upon obtaining awareness from learning information and showing kindness!

This month of #AutismAwarenes I refuse to keep my mouth shut!
I will continue to speak words from my mind, heart, and complete soul up until the day I no longer walk this earth.

Autism Moms are Tough as Nails

They say what doesn’t kill you makes you stronger. Well I feel like I could bench press a semi truck!
The gravity of all the responsibility, care, and understanding that being a special needs parent entails is something you don’t realize you are handling so well at the time (I am always thinking there is something else I could be doing better for my sweet boy), but once you step back an Ah-ha moment of how rewarding it can be suddenly appears if you are lucky enough to catch that awareness.

I had the last 3 days off from my special needs single mama duty and something hit me like a ton of bricks- in an eye-opening enlightened way.
I finally get why people tell me such heartfelt things about how they can see the love, care, and patience I have for Lincoln with every photo or status I post. The best compliment I could ever receive in my life truly!
If your child is fairly non-verbal (like my sweet boy) then an inner private detective has to come out every time they are sick since they cannot tell you what is wrong. Imagine for a moment that you almost have to be like a veterinarian in a way since you have to sense what they are feeling without words and take care accordingly for their well-being.

Challenging? Yes. Rewarding? Yes. Indescribably so.

I sometimes see parents when I am out in public tell their kids to shutup-
It angers and saddens me beyond belief I must admit. Usually I just offer a consolatory smile to hopefully diffuse the situation a little bit however sometimes I feel the need to share a sincere dose of perspective…
Generally something to the affect of:

“You don’t know how lucky you are to hear your child’s thoughts- I would give the world to hear my sons thoughts!”

-This usually stops them dead in their tracks and makes them realize that instead of silencing their child(ren) they should enjoy the gift they do not even know they have. It is not meant to be condescending in any way shape or form- just a small reality check. A little awareness goes a LONG way. For anyone who either has autism, daily navigates the tricky road of autism parenting, and also for “regular” children and parents (I abhor using the word normal) as well. Appreciate what you have however you have it. Children are a blessing beyond what words can ever describe in a limitless amount of ways…

They say you don’t know true love until you have a child and I couldn’t agree more. It truly is a momentous occasion to forever have your heart walk around outside of you on this earth, and it is your given right thereafter to embrace that love with your whole heart chock full of gratitude. I believe with my entire soul that if I were to get hit by a bus tomorrow I would die content knowing that I gave my all to him.
Is there anything more you could ask for in this world…?

The day he realized he wasn’t scared of bubbles anymore at a therapy appointment. Bliss.

My love. My everything.

I don’t Need anyone But that doesn’t mean I don’t Want anyone

I try to not ever let my sweet son see me cry…
Currently he is pressed up against me laying across my chest and I’m crying the sort of tears that roll down your face but remain silent. Only the sound of my chest heaving and gasping for small breaths are heard (I mastered this in my previous marriage learning how to cry this way unseen so that I wouldn’t be laughed at, openly mocked, and of course so that my little man wouldn’t see me break down). Today though my back has broken. I awaited his gastrointestinal surgeries with no sleep, no hand to hold, no shoulder to cry on, and only support via Facebook friends after posting a status.

Being back at All Children’s Hospital yet again as I previously have gone for less invasive procedures by myself, but now surgery having him undergo actual anesthesia has shattered me to my very core. It flashed me back to being in this same surgical ward when my nephew was young and had to have a couple surgery’s for a hernia problem. My sister, her husband, his mom, my parents, and I were all there waiting together for this journey. Holding the pager waiting on pins and needles eagerly for the clearance to dash in to recovery with baited breath to see him and make sure our sweet angel was okay. We all sat together biting our nails covered in dread-filled love worrying that something could go wrong. It didn’t thankfully he was just fine. Is that not how it is supposed to be though- family coming together in a time of crisis?
Nope. Not for me. I sat alone in the recovery area before he was brought out and then waited the whole time he was asleep stroking his forehead talking with the post-op nurse.

When I say I had no one I truly had no one. This surgery had been in process for months of being scheduled then rescheduled as to conflicts because I wanted my family, ex-husband, and even his family there too for moral support. I had to cancel last months since it fell on that “2 year mark” of a previously blogged about atrocious traumatic incident that happened to me. Thankfully I was granted a couple days of freedom to embark on a semi grieving stage, so I wasn’t sure if I could even leave him after his recovery; however inquiring if he could be taken care of afterwards without me the answer was a clear resounding NO. I got the green light for the appointment time yesterday and didn’t even bother to message my family again. Every other previous time was filled with excuses and honestly I didn’t feel like being degraded any further begging for a little help. Why should it come to that? Should it not inherently be an unquestioned resounding YES when it comes to a matter of such severity? It’s not just this surgery today- it is all the accumulated weight I have carried these past 5+ years after getting him diagnosed on the autism spectrum having to handle every single thing in that gigantic can of worms on my own. I won’t get into any “woe is me” martyring session here. I have just decided that I don’t think I will ever ask for help again. Not from my family, my ex, his family, or even from my friends. Yes of course we all have busy lives- but when someone I care about is in need of help I literally drop everything to be there if/whenever possible. Apparently expecting others to be there for you through thick and thin when you have been there for them is about as pointless as debating whether the world is flat.

My heart has fallen and shattered into a million pieces and I fear that just like Humpty Dumpty “all the king’s horses and all the king’s men” cannot put me back together again.

the daily struggles of a single mom with a special needs child

I love my son more than life itself despite the setbacks of having him not be able to communicate with me (which of course sometimes absolutely breaks my heart to shreds). Today however was rough. I try to not be bitter; However my lovely Ex-husband and father of my child is currently trying to reduce his child support payments knowing darn well that the 6 & 1/2 days a week I have him make it virtually impossible for me to work given Lincoln’s therapies, constant sicknesses, and the fact that I would need an impossible dream-like set schedule of when he is at school. Not taking into account the summer/winter breaks, the professional days (which he does not ever help out with), and the Incredible amount of sick days he misses school since his often stomach sicknesses made me decide to take him to the best gastrointestinal specialist in the area at All Children’s Hospital. So add in allergists, feeding therapists, and nutritionists (did I mention all by my myself again?), and basic speech, ABA, and occupational therapy I am basically up not just an unfair creek without a paddle but actually a winding river of rapids trying desperately to navigate myself with all the choices, incredible amount of paperwork, research, and etcetera that comes with the territory.

Sometimes I get quite resentful that he has his day & 1/2 of time when they just play and have fun, But then mommy has to be the mean one taking him for skin and blood tests, tons of evaluations to get him into new therapies, and other implementations from the therapies I have learned. Insurance companies don’t want to pay for these in case you weren’t aware. So it is a constant battle of phone calls, paperwork, faxes from specialists, and constant headaches basically trying the absolute best for your child who does not have his own voice but sadly also not another voice from his family. I’m not going to sugarcoat this- it’s disheartening, and some days I feel like throwing my hands into the air and saying “Forget it- he will just continue to exhibit behaviors of a 2-3 year old yet he is 6 & 1/2”.

My normally positive posts are not so glowing tonight instead there is a haze of sadness and hopelessness.

I know there are resources out there (Especially for single moms) but I have no clue where to look or where to begin. Anyone reading this in the Florida area please leave a comment to give me any advice since I fear I am fast approaching the end of my rope.

Yet I have to hang on as there is NO other option for my sweet boy.