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.

aut10aut13

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.

autyesauttrueautlove

Autism- the Good, the Bad, and the Ugly

It has been a particularly stressful week being an autism single mom…

Today I’m going to drop the semi facade of the whole “blessing in disguise” business. Yes- that is true SO much of the time. But other times I bawl my eyes out in the shower and scream into a pillow if deemed necessary. Everything I have done on my own with no help whatsoever can be so overwhelming that the weight nearly cripples you. From getting him diagnosed around 18 months of age, early intervention therapies @2, getting him into the best researched school @3, and the countless IEP meetings, mountains upon mountains of paperwork, therapy appointments, specialist appointments, research to seek out other alternative therapies (which of course involves me fighting with the insurance companies trying for them to pay the normal co-pays instead of the through the roof deductible I could never meet), and again with virtually no support…. It’s backbreaking on my own sometimes.

I see families of autistic children that at least have each other to lean upon whereas I do not. His father sees him once a week on Sunday (so no Dr’s or therapy appointments there) and both of our families rarely see him. Just to be asked if there was Anything they could do to help would mean the world to me, but instead anytime I ever have asked for help I get excuses and BS about their lives. Sure of course no one’s life is easy by any means but for Christ’s sake this is A LOT to deal with! Even if they aren’t willing to help with some of the nitty gritty they could at least offer a shoulder to cry on when I fall to pieces occasionally.

Yes you are not supposed to play the comparison game, but it’s hard not to sometimes when it virtually is thrown in your face seeing children 1/3 of your child’s age posting “I’m getting my son into little league and soccer teams finally!!” Or “My daughter just got accepted into the Gifted program and an advanced coveted dance school!!” And I’m over here like “I’m trying to get my son to stop using the floor as his bathroom!?”…..
It sometimes just feels cruel and utterly disheartening. I know the parents intentions are not to maliciously brag about their child’s accomplishments- they are just proud and have every right to be. However I also know that they don’t realize how hurtful it can be to see the advancement of kids the same age or much younger getting to do all the things I wished so much my sweet son would be able to do by now. It can be heart-annihilating. At some point all special needs parents whether we would like to admit it or not went through, or are going through, a grieving process. Grieving the loss of what we thought we would have raising an average or “normal” (I abhor using that word) child progressing and excelling throughout life instead of the many despondent roadblocks. To honest I went through that mourning period of what was “supposed” to be. All the dreams and aspirations I had for him I have no absolute way of knowing if they will ever come true.

 I Do with all my heart believe in time he will shine and find his true niche in this world. Until then I will stop at nothing to help him be the best Lincoln he can be. It’s not about “fixing” him- it is about helping him take strides to rise above and put the ability in disability. Thankfully some of the battles have eradicated themselves becoming just a past memories of this journey leading to our final destination. Like the quote by Lyndon B. Johnson: “Peace is a journey of a thousand miles and it must be taken one step at a time.”  Life as we know it today may be unrecognizable this time next year. I pray with all my heart to a God I am unsure if I still believe in that this will be the case for Lincoln and I. Every single stride he takes forward is a step towards a brighter future.

Despite these troublesome days where I think I may just lose my mind- I always remember the famous quote: “Expect trouble as an inevitable part of life and repeat to yourself, the most comforting words of all; this, too, shall pass.” ~Ann Landers

Never, Never lose hope! I remind myself of this constantly. Also that perhaps I could be inspiring someone right now with my truthful words helping them realize they too can persevere through an exasperating time. The best part though is that I can say with 100% honesty that I feel lucky how Every single new thing my son does my heart absolutely overflows with elation! And that is something that parents of “normal” children I dare say do not notice, and at least definitely do not appreciate to the extent we as special needs parents do. We break down in happy tears of genuinely euphoric measures.

That is truly priceless beyond what any words could ever express.

autmoms2autmomslolautlolautmom3

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!

autstressahserenityautohboyryaaaaaan