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.

 

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

Can they invent a pill for Autism Mamas to become stronger?

It is now 4 am.… Insomnia has won it’s battle against me once again.
This week I have not slept barely any hours more at night than a newborn baby.

I will be taking my son to several specialist appointments this week trying my best to advocate for his well-being. Unfortunately this is a 1 woman job here.
I have not an ounce of support from family to help with these absolute hell-ish appointments. The goal is getting to the bottom of these potentially attributing factors to his sensory issues. Perhaps it is simply a metal toxicity buildup from those aforementioned shots that I immensely feel affected his sweet yet sadly delayed neurological delays. I found out from a grueling comprehensive blood-work and stool sample tests that he is allergic to so much it is insanely overwhelming.

It does honestly break my heart at times seeing him function on such a lower functioning level. The veil is dropped right now as I am so raw.

He is 6 years old and is so far off from crucial things like even an unprompted sentence of more then 4 words (“I want crackers please.” is his longest).
He puts his shoes on and grabs my flip flops to put on my feet and says
“Ok car!” meaning in his adorable yet mysterious mind that he wants to go somewhere. That warms my heart. I want So so very badly to hear his thoughts that I sob hysterically sometimes wishing that we had a verbally communicating relationship where I could actually hear his sweet voice all the time- instead of his small tantrums when he gets frustrated that he cannot communicate his needs. He has gotten very good at non-verbally communicating these by grabbing my hands and saying one or two words to express his pressing needs. However I realized that if I continue to abide by this that I will essentially continue to be raising a 2 year old son…

This again is what most Autism parents Do not talk about. We want to sugar coat things about how much we have learned and how much hope we have for their futures, yet we do have those days when we fall apart. Our hopes and aspirations can become a light at the end of the tunnel that dims to darkness. I will never ever stop researching, advocating for new therapies, fighting with the insurance companies to cover them, reading every book I can get my hands on for new insight even if it seems like futile effort at times.

We had such a fantastic day today – we truly did. Filled with so many cuddles and laughs. My heart overflowed when he grabbed my hand to stroke his face and tickle his chin and stomach more and more and more! It was so joyous the grin on my face made my cheeks hurt. Yet I am completely dreading his radiology appointment to have a upper GI exploratory MRI where he has to fast (not even water), and the hour drive to St. Petersberg All Children’s Hospital will be sheer torture. If he even has a stethoscope put to him, instrument to look in his ears, or take his temperature it results in thrashing and me usually ending up with a few headbutts and a bloody lip. It is a difficult task and job in itself to be a single mother handling this navigation alone.
Not to sound like a martyr – these are the cards I was dealt and he is my angel. Sometimes it is just plain difficult for me to not bitterly resent his father for never even going to one therapy appointment, one doctors appointment, one specialist appointment in order to get him diagnosed, and also the fight to get him into the best schools and newest therapies. I wish so much I could let go of that (dare I say) hatred.
I know it is not healthy– but sometimes I can’t help but remember all the abuse towards me and then of course the complete lack of involvement of his sons life only seeing him once a week. It not only harbors ill feelings but deep sadness for Lincoln that he doesn’t have 2 parents- he has a mother that bends over backwards for his needs and a father that barely makes any time to care for him. I have said incredibly nasty things that at times I regret… calling him a “sperm donor” wasn’t exactly my finest moment. I at times wish I could take it back but other times feel it was completely warranted.

It is honestly wearing me incredibly thin. My auburn red hair is massively turning grey. Wrinkles are abounding.

Weekends come when I have my one day off yet I feel so exhausted I cannot even fathom leaving my apartment to decompress and that sometimes surfaces in not very healthy ways. Something has GOT to change! I do know that I can handle anything, but sometimes wish so much that it all was not completely on my shoulders. OK enough with the semi negative spewing!

Nothing great in life comes easily.
I’ll never give up my unwavering faith for my sweet Lincoln. I’m reminded of this cheesy song by B.O.B. and Taylor Swift that touched my heart and aptly applies to my situation “I wish I was strong enough to lift not one but both of us. Someday I will be strong enough to lift not one but both of us.” This will be our reality- I do not doubt for one second!

Autism- 1 in 50… Will it continue to be swept under the rug

I‘m going to try and not get too entrenched into my tangent of all the research I have done about this spectrum disorder and the factors I believe need to be given serious attention to such as hereditary factors, allergies to the additives, preservatives added (which again has to do with each persons biological makeup), and hormones during pregnancy.

Think about it for one second- If the mother or father has for instance testosterone deficiencies (which might explain the fact that boys are 4 times more likely than girls to develop this) it can directly affect the child’s chromosomes and also the ability of the nervous system to process things like the large amount of medicine and chemicals pumped into their system at such a young age when their development is so incredibly crucial. One must have to wonder why hardly anything is being done to get to the real bottom of this continually rising epidemic….?
A baby in the uterus halfway during pregnancy can be tested and ruled out for having Down’s Syndrome. According to the CDC “Down syndrome remains the most common chromosomal condition diagnosed in the United States. Each year, about 6,000 babies born in the United States have Down syndrome. This means that Down syndrome occurs in about 1 out of every 700 babies.”
(http://www.cdc.gov/ncbddd/birthdefects/DownSyndrome.html)

So 1 in every 700- yet 1 in 50 is not being adequately and promptly addressed? Why is there no test to determine ASD? Perhaps this is because it is a Spectrum disorder and is not prevalent in the womb – only surfacing after exposure to certain elements. The fact that Autism is different with each person should prove my earlier point that everyone’s genetics seem to factor immensely in this challenging puzzle. Autistic people are sometimes given the comparison of a snowflake- since no two are exactly the same.

The controversy surrounding the MMR (measles, mumps, rubella) shot should be given some careful consideration. There are 3 different medicines simultaneously being injected and chemical additives, preservatives, and stabilizers such as aluminum, thimerosal (mercury), monosodium glutamate (MSG),  AND formaldehyde. Formaldehyde really….?? A known carcinogen that causes cancer injected into our children during the most critical period of growth and development?

Here is one of these poisons broken down in layman’s terms:
“Thimerosal is a compound made up of approximately 50% mercury. Mercury is the second most poisonous element known to man (next to uranium and its derivatives.) When someone says, “MERCURY!” we immediately think of the news stories about the child at school who broke a thermometer in biology class and the HAZ-MAT team was called in and all the students were in peril. Did you know they make that big of a deal (meaning bringing in the HAZ-MAT crew) for less mercury than what is contained in 1 vaccine?(http://www.epa.gov/mercury/spills/index.htm)  Thimerosal is used as a preservative in vaccines to help prevent bacteria growth in multi-use vaccines.  It is also used in the creation process of a vaccine, and then through a purification process it is “removed” and only “trace” amounts are left.” So how much does “trace” mean?  According to the CDC, it says less than or equal to 0.3mcg per dose.  Sailhome.org does a nice job of putting this into perspective:

• 2 ppb mercury is the mandated limit in drinking water 

• 200 ppb mercury in liquid waste renders it a toxic hazard 

• 25,000 ppb is found in infant flu shots 

• 50,000 ppb is found in regular flu shots — recommended for children, pregnant women, the elderly…

Also the math on how many ppb in a “thimerosal free” vaccine:

0.3 mcg / 0.5mL =
0.3 mcg / .0005L =
…3,000 mcg / 5L =
600 mcg / L
1 mg/KG = 1 PPM (formal definition of PPM)
1 L = 1 KG (density of water or saline solution)
1 mcg/L = 1 PPB (because 1 KG and 1 L of water are equivalent)
THEREFORE:
600 mcg / L =
600 ppb Thimerosal in the “thimerosal-free” vaccine

Flu vaccine has “only” 25 mcg Thimerosal. The shot is 0.5mL. Let’s do some math:
25 mcg / 0.5mL =
25 mcg / .0005L =
250,000 mcg / 5L =
50,000 mcg / L
1 mcg / L = 1 ppb, therefore
The shot has 50,000 ppb of Thimerosal. Remember that 2 ppb mercury is the mandated limit in drinking water and normally 200 ppb would label something a toxic hazard.” —-This information was retrieved online http://vaxtruth.org/2011/08/vaccine-ingredients/
(The above was Not my writing just for the record. I would never plagiarize another writer!)

Just a little clarification- I firmly do believe the pharmaceutical companies do not want you to connect the dots. Clearly they spend plenty of money keeping these facts silent and destroying the lives of people who come forward like the recent news of the #CDCwhistleblower. I won’t spout conspiracy theories even though I would like to. Call me crazy if you would like- everyone is entitled to their own opinion and protected by the first amendment of freedom of speech; however there has to be an underlying reason as to why the rates just keep soaring and No one is doing anything in our government, pharmaceutical big-wigs, the CDC, and so on and on….

I will use every breath I have, tears that have and continue to be shed, and whatever amount of money I can use to bring about awareness so that hopefully our government will be driven to devote more funds to research. If they could figure out the root cause and make specific tests to determine a child’s predisposition to developing this it would certainly be a LOT cheaper than all the state funding for therapies and SSI payments.

One last bit of information swirling around in my head is that since Autism is indeed a neurological disorder think about how many other disorders occur when a person has something like bi-polar in their family tree. This is a well known undisputed fact that if someone experiences a trigger like a traumatic event (which in this case their bodies suddenly being overwhelmed with all these known toxins could/can certainly cause damage to neurons and brain chemicals) that their genetic predisposition can make the condition appear or exasperate it. Again for the record I am not saying his Autism was “caused” by the shot, but I know from seeing it with my own eyes that this dramatically affected the delays he previously had shown, but he progressed and caught up accordingly. After the shot- Gone! Significant backtracking instead of continuing to advance forward. His ever increasing and wonderful progress was annihilated and then he was completely different within a week after getting that MMR.
As his primary caretaker I spent every day of my son’s life breastfeeding until he was one, sang to him every night in our rocking chair, and spent every day blissful playing and experiences new memories.
We still are blissfully happy together him and I, but the hardships I was not prepared for were definitely something a parent could and would not imagine for their child and life.

Moral of the story is that I will never give up! My voice will be heard!
Advocating since my son cannot speak for himself. He was recently assessed at yet another speech evaluation to the age equivalent of 2 years and 3 months old. He is 6 years old turning 7 soon. That was a truly heartbreaking day to see it as fact on paper. The reality pill was hard to swallow and cut like glass through my stomach trying digest it.

Every day is a new day though to make progress and I will never stop believing that he will continue to develop into his full potential!

Watch out world someday Autism parents will unite and DEMAND to not be silenced!

Lessons Learned from Lincoln

I thought I knew true love until I had my son….
The most extraordinarily intense and profoundly consuming moment of my life happened 5-14-08

I can still vividly remember the moment they put him on my chest and I kept saying ” Ohmygod Ohmygod Ohmygod!” tears rushed and poured down my face onto my neck where we snuggled our bare skin.

This was the moment I knew my life had real meaning.

The excruciating pain of natural childbirth subsided (well a little bit) while I closed my eyes and savored his first breaths in the world, and every moment thereafter overwhelmed with gratitude.
Those early moments of breastfeeding him, being woken every 2 hours to feed him, frantically checking on him every hour to make sure he was still breathing… These are the most exquisitely neurotically beautiful memories I’ll ever have probably in my entire life. I knew that I would die a thousand deaths if something were to ever happen to him. The quote by Elizabeth Stone suddenly made such profound sense-

“Making the decision to have a child – it is momentous. It is to decide forever to have your heart go walking around outside your body. ”

As Lincoln began to grow the cause for concern was prevalent. He was late on his milestones. Keeping his head up (granted he had a huge noggin) sitting up, walking, and talking. However he would always catch up in a decent time-frame. Until around 18 months of age when I wanted to enroll him in a school that specialized with children that had developmental delays and they forced me to give the vaccination that has all the controversy swirled around it. Now I am NOT saying his autism was Caused by this. However within the week all his words were lost, eye contact gone, and all he wanted to do was spin any object he could find. These are the textbook indications of Autism. Even my ex-husband/his father who was pretty absent the majority of the time noticed this shift instantaneously. Well it was crushing. I’m not going to sugar coat that. No more games we would play together, no words like “mama” “baba” “dada” and so forth said, no interest in playing with other children. It all vanished… coincidental…? I think not…

People oftentimes ask me if I would change/fix him if I could or even go back in time and maybe not have kept the pregnancy (to which I of course use self control to refrain from slapping them silly)…? NO NEVER!
Would it be easier to have a “normally” functioning child? Of Course.
Would I choose to not have him just as he is in my life? Not a chance in hell.

Please watch this video to show this amazing father’s story of his daughter that is on the spectrum. He wrote down a bunch of accurate facts (which some I know have increased) comparing other conditions that receive SO much more funding than ASD. It is eye opening and a bit of a tear jerker! But a must watch for awareness-  http://youtu.be/z2B1FeS5VX4

Moral of my story is that Of course there are challenges, But Oh so many joys. He has expanded my mind and soul every day with his sweet little life. I am forever grateful for having him and hopefully someday there will be a way to “Fix” him, but if not I will love him neither any less or even potentially more than I already do because he is the Love of my Life!

 He is my hero and I strive to be his Heroine~

One of our many tender memorable breastfeeding moments and now memories…