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National Autism Awareness Month
- Ashley
- Jan 10, 2017
- 7 min read
In just a few months on April 2, 2017, the world will light up blue in support of Autism and we will join Autism supporters, educators and organizations by raising awareness and raise funds for the cause.
Autism, also referred to as Autism Spectrum Disorder or ASD is a complex brain development and intellectual disability which affects cognitive function, verbal and non-verbal communication skills, social and emotional interaction, sensory integration, along with many other delays and medical disorders. The rates of Autism have increased to 1 in 68 children in the U.S. which is substantially higher than previous years; this could be contributed to the fact that we are becoming more aware of the disorder as well as increasing the amount of education we are receiving. Although the numbers of those affected has climbed there are many others who remain un-diagnosed due to the lack of awareness, education and/or available treatment. There is no cure for the disease, however, with early intervention, raising awareness and providing education it is believed that we can improve and overcome the various symptoms of the Autism disorder.
It All Begins With A Blessing - Sariyah’s Story ♥
What To Expect When You’re Expecting!
Beads of sweat begin dripping from your brow, palms sweating and the faint sound of the clock ticking in the background beats slower by the second; as you lift the test from the counter your heart begins to rapidly race as if escaping your chest… You take one deep breath… You’re pregnant!
The first thing you want to do is scream with excitement and celebrate with your partner meanwhile planning every detail up to and after the delivery of your precious bundle of joy… Is all I could do was sit at the edge of the sink and cry, feeling guilty for my ungrateful reactions and feelings; Wondering how I would manage a third pregnancy with 2 small children meanwhile working full-time and preparing to move, yet again.
I was completely detached from this pregnancy, I hated every minute of it and my biggest fear… hating my own flesh and blood. For 9 months I carried my child with no emotion whatsoever, the only connection.. an umbilical cord. A part of me felt as though she knew how I felt, she sat silent in my stomach, growing for 9 months and rarely moving. My midwife was on speed dial, hearing from me at least once or twice a week. I remained anxious in each appointment as he searched for a heartbeat, as the doctor presses on my stomach and moves the cold Doppler along my belly – the sound of a faint heartbeat appeared and a swift movement followed; like a teenage child it seemed as though she rolled over and covered herself back up with a blanket.
Allow us to present..
Here we are, October 17th 2008… It’s delivery day! As the doctors prepared me for delivery I remained anxious, not knowing what to expect. It seemed as though hours had passed
before the long-awaited moment had finally come; from behind the curtain the nurse appeared and gently placed a sweet angel tucked firmly in a hospital blanket into my arms. Sariyah, a true blessing from above was born! “Congratulations, She is an absolute beauty!” I couldn’t help but kiss her sweet little head and cry; weight had been lifted from my shoulders and doubt removed from my heart… I was absolutely and completely in ♥love ♥!
Something still didn’t seem right.. Something was missing… or off, in the pit of my stomach I still felt anxious and uneasy. The next few days were spent cuddling my sweet angel in my hospital bed, tickling her toes and feet to get her to wake so that she could eat. After several minutes of torture she would awake long enough to eat small portions but quickly fall back asleep just a few minutes into feeding. She became tolerant of the torture and was able to sleep through it all, not even waking to alert the staff or I that she was hungry. My sweet precious girl just slept quietly in her cradle, she was just too
perfect! Concerned from the lack of eating and fluid in the lungs, Sariyah was fitted with a feeding tube and placed in the Newborn Intensive Care Unit, where she could be observed closely and would stay for the next week. As scary as the idea of the NICU may seem, it actually was a quiet and peaceful place to be and I spent as much time as I could there.
Once she was able to consume a full feeding and cleared of all other concerns, Sariyah was released and able to come home. As we arrived at the house we were greeted by her grandmother and siblings who showered her with countless kisses and gentle hugs, meanwhile sleeping through it all. For the first 6 months of her life Sariyah slept through the day and night, waking briefly to eat before returning to her beauty rest.. as if she needed any more. Her feedings consisted of either one eye open or both eyes closed. She was lazy… and very quiet. At about a year old, Sariyah began to pull herself up in the play pen and stand at the sides pressing her face against the mesh. She would be in her own little world often staring off into space. “Sariyah” I called, with no response I called out again (singing), “Sariyyyyaaaaahhhhh”, again no response. This became a typical occurrence, I chalked it up to selective hearing figuring she was just an all out diva and wasn’t even trying to hear me.
We began to pay attention to the things that Sariyah was and was not doing. She was reaching her milestones much later than most children her age, wanted nothing to do with groups of people often fussy during gatherings, was not responding to her name and would not make or keep eye contact. Being naive to developmental delays, I had just assumed she was just a lazy little diva. At 15 months Sariyah had still not hit many of her milestones, had trouble grasping as well as a clear delay in communication. With the help of my mother, we made an appointment for Sariyah to be screened for her hearing as we only assumed that being deaf was a possibility. In the appointment we had an opportunity to meet with a psychologist who assisted in Sariyah’s screening, he was very knowledgeable and guided us through the stressful appointment due to Sariyah’s lack of/willingness to participate.
As we sat in the doctor’s office I wasn’t sure what to expect, most certainly not what was to come next. As the psychologist begins to summarize the results of Sariyah’s exam he informed me that she had cleared the hearing test based of her minimal participation and that they were certain she was not deaf. A sigh of relief was in order but I had seen a “but” coming from a mile away. The next words spoke to us were “Your daughter has a developmental delay and falls within the Autism Spectrum..” My face just relaxed, my jaw dropped and immediately I felt as though I had done something wrong. I continued to listen to the doctors explanation of the diagnosis, the do’s and don’t(s) and what was to be expected; but in the back of my mind I could only try to figure out where I had went
wrong and how we were going to manage this diagnosis. With the referral of the psychologist and Sariyah’s primary care physician we began early intervention with DDI Vantage. The company proved in home therapy services once to twice a week for occupational and speech therapy which continued until Sariyah turned 3 years old. Sariyah loved to fight her therapists when learning to communicate through sign and verbal ques but loved to interact through music, sensory play activities and eventually compression. Since her diagnosis Sariyah has excelled in many areas due to the tremendous amount of support from family, friends, therapists and teachers; although she still lacks the ability to communicate effectively and struggles with other delays it doesn’t stop her from being the rambunctious little comedian that she is.
We understand that it is going to take a lot of work to get Sariyah to where she “should” be, but it doesn’t stop us from loving every bit of her. I have the most amazing connection and relationship with Sariyah, she is such a true blessing and gift from god. I believe that there is a reason why god made her so special and this diagnosis did not disable her, rather made her personality more colorful and unique. As an Autism parent, I had to realize that this disorder was not a punishment and I can’t exhaust myself with why and how; The best thing I can do for Sariyah and I is work hard and love even harder!
What Difference Are You Prepared To Make?
Autism awareness is not limited to just one day, it is something we do all year round. I find myself educating people on a daily basis and realize I could be educating even more. The point of educating is to share what we have learned, thus the reason we pass along the things we have learned or even learned from. Education is key, without this we are useless. Be it by word of mouth, sharing an article or even wearing an awareness T-shirt; you too can help raise awareness and educate others. Just remember, the key to understanding is asking questions; don’t be afraid to ask because you can’t understand if you don’t know how.
For more information and facts about Autism, tips and additional education visit the National Autism Association or find Support in your Area. You can help organizing a fundraiser or Donate via the NAA website or by shopping with participating partners.
Other participating charity’s:
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