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!

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 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.

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!

My past life- Part I

Today has been a day full of reflection and deep insight.
Primarily focused on my son and how I would move mountains for his well being as I am currently shifting through scheduling multiple specialist appointments trying to get to the bottom of how else to help him on his sensory issues. When his father came to pick him up unfortunately a wave of hurt washed over and knocked me down a bit. So as a method of coping I’ve learned to release my emotions/sadness/grief/pain to channel it into a healthier almost therapeutic place through the power of my words.

Seeing him for some reason today flashed back so much of the abuse I endured being married to him (no names will be mentioned- obviously if you know me though you know the culprit) and of course the painful decision I made in divorcing him. But his cruelty I just could not bear anymore. It was “ok” for me to endure it and let him beat me (literally a few times but emotionally/verbally on a constant daily basis), but when I realized it was affecting my son’s advancement with all the therapies I had him enrolled in for his autism suddenly it hit me like a ton of bricks that one day my sweet boy would grow up thinking this was an acceptable way to treat women… !

I will never forget the moment that I knew for a fact that I was DONE…
I had always tried to conceal my tears and sadness by crying on the floor of my bathroom in the fetal position hyperventilating, getting panic attacks that ensued in sometimes making me vomit (convenient that I was right near a toliet) however this particular time my back absolutely broke!
I was being screamed at in my face about how I didn’t deserve to live in his house (which he moved in only 1 week before I did) but of course never put me on the deed. There was never a partnership– dictatorship was an accurate description. As he was yelling in my face about me only doing 7 of the 10 things on the list he had written for me to do our sweet son was running around happy as can be and followed us into the office where he was still in my face yelling how “F***ing useless you are!!” and “What a selfish undeserving ungrateful B**ch you are!!”…..

At that moment our son looked up at me with tears streaming down my face (with his sensory issues he senses and feels my sadness/anxiety since we are so in tune with each other) so something just finally snapped in me.
I said “DO NOT ever speak to me like that again in front of Lincoln-
We are GONE if you do that again!” Of course shortly thereafter it happened again. Screaming maybe an inch or 2 away from my face about X, Y, or Z he was angry about and again how I didn’t deserve to live in his house. “Our” house I had made a home decorating, buying our bedroom set, enlarging pictures to hang (which I was never allowed to hang -He had to and wouldn’t let me).
What was “supposed” to be a safe, loving, and trusting environment was more like a dungeon.

Now it finally dawned on me that It was never my house. I was his cleaning lady, his sex slave since he only wanted it on his terms, handling EVERYTHING regarding our son’s life- every 2,4,6 am wake-up call to breastfeed him, every insane specialist and doctors appointment to get him diagnosed, the mountains of paperwork getting him enrolled into early intervention therapies, and anything else regarding his care.
Of course not a grain of respect was ever given… Even to this very day.
All of the sudden it hit me I was a single parent the entire time.
To the outside I had it all… a physically attractive husband, beautiful brand new custom house, plus the nicest of electronics and furniture… But you know what? It didn’t mean anything to me.

I realized that it was a glass house that I had wanted to throw stones in to shatter a LONG time ago but had been too afraid to.

After that brutal fight I said “You don’t want me to live in this house? OK I am Gone!” and I looked at an apartment the very next day- said “SOLD!”, put down all the money I had then informed him that evening a week before Christmas “I’m moving out 1-1-11. We didn’t spend last new years together and I intrinsically knew we wouldn’t be starting/spending this year together”. It was prophetic to me. Deeply so. He had left me last New Year’s Eve to stay at home with our son as he went on a limo to the Hard Rock with friends from work (including the 19 year old girl he later cheated on me with which I came to find out started even before I moved out).

In this aforementioned life I was constantly told how stupid, useless, and undeserving I was. So starting college has been an intensely difficult path filled with emotional roadblocks. Those devastating emotionally abusive words stuck with me all this time and were the cruelest thing imaginable to attack ones psyche. He would say repeatedly “You are so stupid and uneducated- You only have a 4th grade education” (OK because graduating with an accredited diploma @15 certainly screams dumb?), and then the most crushing “You are an incredibly loving person- you can get anyone to fall in love with you BUT once they get to know the real you they won’t love you anymore“… Could there be any more heartless poison to inflict upon someone who claims to “love you” and vowed to love you forever… ? Of course there were many other terrible things said and done that I have semi blocked out, but those always managed to stick around in my battered heart.

The overall moral of this very long story is that I chose my happiness which in turn directly affected my sons happiness. Making that incredibly hard choice to leave was heartbreakingly difficult. Yes some days I do feel a bittersweet sting every time I see a family playing at the park with their child it hurts. Not just that I don’t have that built in support, but I feel so sad and sorry for my son that he only has a father one day a week. I do however know that I will eventually have someone in my life that will be a True partner. Someone who wants to see me happy and will build me up instead of someone that enjoyed degrading me on a daily basis, and took the best of me for granted literally and at times figuratively throwing me to the floor.

My journey has led me exactly where I need in order to be the Best possible me. What price tag could be put upon that? The fat bank account previously where I never needed to worry about bills…? OR the satisfaction knowing that I have and continue to make it on my own and give my son the best possible care the 6 & 1/2 days I have him? It is a no-brainer.  Lincoln and I are so happily connected and have experienced so many amazing things together. So would I change things? No way! Despite many hardships/cruelty that is sadly still ongoing I know without a shadow of a doubt that I am strong enough. Not just for me but advocating for my amazing son as well.

Every time I hear him joyfully singing I know that is ME! I sung to him while in my belly. I have sung to him every night since his birth. All the moments he fell asleep on my chest after breastfeeding I stroked his forehead and tiny arms with love that was beyond the most intense powerfully loving feelings I have ever felt. Those memories are priceless beyond whatever material possessions I had or could ever have in the future, and for that despite all the setbacks I’ve had I am truly just filled with eternal thankfulness.

He is my rock. My daily inspiration and insight to what living is truly about. 

He truly is my Sunshine. My reason for living and thriving