Discover the Power of Knowledge

When Ian got diagnosed at twenty-two months, I had Speech and ABA scheduled to start that next day. I believed nothing would change. Autism Changed Everything. Everything I knew about life would be thrown out the window. As a single mother, I found myself unable to finish college, unable to find child care for the reasons of Liability Risk, Lack of Training, and Insurance reasons. Life Happens.  

We started 30hrs a week of ABA, 1hr a week of Speech all in-home sessions. I remember the first month being the worst for me. On this specific day, Ian had been screaming horribly, and I had bite marks down my arms, the behavioralist sat on the floor, blocking Ian from getting to me. In my mind I'm his mom he's screaming I want to find out why? She asked me not to pay him any attention(do you understand how hard this was, I was in full-blown tears, trying to manage my emotions), as she continued to demand communication. All of a sudden, you hear in this squeaky little voice "MA" I jumped up so fast, grabbing Ian with so much love in my heart and excitement "I'm MOM" with happy tears I kept repeating myself.   
 

In these years, Ian had a difficult time sleeping, and I found myself researching. Days turned into years of running on fumes. Our apartment looked like an OT facility, and I laugh now because I would always say I'm just here to supervise. When EI(early intervention) ended, at the age of three, Ian started an ABA modified SDC(special day class), and Ian loved it. Ian has always been a very affectionate and happy child, regardless of the situation. I noticed he would be the only child not interacting, staring at the ceiling, and that concerned me. Ian needs constant supervision; he is an only child, so he has my undivided attention, and I want him to live the life he is meant to live. So I worked hard and fought for these things. I went back and forth for years with the school district to finally walk out of an IEP, feeling as though I was on top of the world. It's like everything I had believed, and all my concerns were finally heard. In the First Grade, Ian got his Support, and he had a One to One. 

I want the best for my child, as so many of us do. With the help of ABA, I would plan an outing to the movies, water park, mall, parks, stores, and they even assisted in gymnastics, tee ball, and dance class. It didn't matter if Ian could only last five minutes, we tried, we will continue to try until it just becomes a way of life or as most will understand "until it's Mastered." As a single mom, I don't have the option to just leave Ian and go to a store. Ian has always had to go with me; there have been many meltdowns, ugly stares, exchange of words, times when I had to just leave a cart full, and there have also been many great experiences. I believe if we didn't experience these moments, Ian wouldn't be able to transition the way he does and handle his emotions, nor would he be mom's shopping buddy.

​I love my baby, I love watching him grow, I love helping him learn, I love all things Ian. Is it difficult at times Yes. Is it overwhelming Definitely. Has it tested my patients? Yes, every second of every day. I use to tell God if this is your way of teaching me patience; this isn't right. I pray every day for my strength, amongst other things. I have always found myself feeling very isolated, possibly due to the lack of understanding and acceptance. If we have been lucky enough to have you in our lives, you know how passionate I am about Awareness and Support for all families touched by Autism what

 I am a proud mom of three perfectly imperfect little humans. My eldest, who is currently nine years old, has Asperger’s. It is a diagnosis that goes under the broad umbrella of Autism. Our son’s daily challenges have shifted tremendously over the years. He has always been someone that is overwhelmed by sensory experiences. As a young toddler, everyday life was filled with a lot of meltdowns and fit-like behaviors because he had very few tools (as all toddlers do) to handle his world around him. His food issues that are still prevalent today were huge as a parent to try and help with day in and day out. He did years of ABA therapy through Discover Hope. There were so many useful tools that he gained in those years, as well I was able to learn parenting tools to help him cope and learn through a world that is often overstimulating.
My nine-year old’s current challenges lay within peer acceptance, anxiety, and anger categories. Food still has its challenges, but after years of “food school,” he has come pretty far. My son is not big on sharing day to day peer interactions. Instead, behaviors often shift, and I have to seek out answers when I notice that. He has been bullied, excluded, and made to feel weird at different times in the last few years, and those are just the moments I have been able to get out of him. My son described his school day as pretending to be normal, trying not to move weird, say the wrong things, or have peers notice that he is different. I hated this description when he first gave it, but then I explained to him that in some ways, we all do this. He is very aware of his efforts compared to those that look effortless.
I believe the intention here was to talk about challenges, but I can’t talk about my son without a quick brag session too! He is extremely bright, hilarious, and thoughtful. As is with many children with Asperger’s, he has a way of focusing in on a subject that can be stunning (though sometimes too intense). He plays the piano beautifully and loves me with all his heart.

My name is Aracely, and I have two Children with Developmental Delays. However, my two-year-old, Matteo, was recently diagnosed with Autism Spectrum Disorder in the past six months. I am no stranger to disabilities in children. My three-year-old son Santino was born with Omphalocele, which means his liver and intestines outside of his body covered by membrane, which also affected his lungs. We lived in the NICU his first six months of life (which I knew meant would not be an easy journey post-NICU). Today, he is doing much better, still medically fragile on Oxygen & G-Tube feedings, and still receives services through our insurance health plan, school district, and CCS. We've been familiar with early intervention services as well since my three-year-old was about eight months. As the months went by, Matteo never held his bottles when most typical children were doing those types of things. He was a healthy growing boy, usually in the 95th-97th percentile of boys his age. Still, nothing stood out until after he was a year old when he was not meeting some of the milestones on the physician's questionnaire by his 18-month checkup. Since having Santino, I am not rigid when it comes to milestones because, after all, every child develops at their own speed. Matteo was diagnosed with Developmental Expressive Language Disorder, and I figured that made sense because, at 18 months, he was not saying words or labeling things or even calling for me or interacting with me. The Doctor did not see too many improvements after speaking with his Therapists and based on further evaluation. I know for me, I was relieved to know and understand Matteo's behavior, etc. finally. Matteo has recently started receiving ABA therapy sessions, and even within a few weeks, I've seen some improvement. Both of my boys are non-verbal, so life has been different than when I had a healthy daughter 20+ years ago. She was talking her little heart out and could say, "I love you, mommy." Still, with my boys, we haven't shared something like that; however, I feel their love, and I know they love me just by looking at how they light up and smile when they see me or when Matteo cuddles up to me and puts his arm around me. We both say "Hug," especially when he is seeking some sensory input (he needs deep pressure hugs, etc. to ground him sometimes). I have a different view of life since having my boys and have much respect for all caregivers because, to date, it has been one of my most challenging jobs but also the most rewarding. I have faith Santino & Matteo will thrive, and I am grateful for the treatments available to help the children & families understand Matteo better.

samSam was born at 32 weeks and spent the first month of his life in NICU as he was going through his assessments for being born prematurely. They kept testing him to see if he was on the spectrum. Sam kept falling behind in some of the areas tested. He was part of the RCEB and was able to get early intervention for what they ended up diagnosing as a speech delay. With continuous family support and speech therapy at just past age three, he started saying words. He finally said, MOM and DAD. He entered into the school district at the age of 3 with an IEP in place, and he continues to receive speech therapy not only at school but through our insurance also. Sam has come this far because of early intervention and support programs, which we are forever grateful.

I always knew I wanted to be a teacher. My mom taught kindergarten, and for as long as I can remember, I always wanted to help out in her class. When I was in high school, I took a class where we got to go to our local elementary schools and teach them PE. I loved the class so much. I decided to take it three times. On my third time taking it, my teacher called me up to his desk and said he needed to ask me a question, that question changed my life. He reminded me that this was my third time taking the class and asked if I was interested in teaching PE to the special education class. I nervously said yes. I am ashamed to admit it, but up until that point, I had had little to no interaction with anyone who has special needs. Those kids changed my life, and I had no idea what I had been missing out on. I eventually went on to college and decided to go into occupational therapy since my mom had tried to talk me out of teaching. While I was in my third year of school, I was taking a class on the theory of autism. I got to work one on one with a little boy who had autism. While taking that class, I knew that occupational therapy was not for me and that my heart was with special education. I called my mom with my heart racing and let her know that with only one year left of school, I was changing my major. I worked my butt off the next year to get all my classes done and apply to a credential program. Special education has impacted not only my life, but my whole family and friends lives too. I truly am not passionate about many things, but I could go on and on about special education to anyone who listens to me. One of the biggest challenges that I have faced is trying to find a balance between my work life and separating it from my home life. I often wake up in the middle of the night with ideas for my class, I spend my weekends worrying about them, I'm constantly researching, and I am always thinking about if I am doing too much for them or not enough for them. This has left me drained and feeling empty, and I still struggle to find a balance between work and my life. Another struggle that I have is being a younger teacher with no kids. I struggle with putting my foot down and speaking my mind to administration, parents, service providers, paraprofessionals, etc. Lastly, my biggest challenge has been the lack of support and understanding from people who have zero experience with special education. My greatest take away from teaching special education has been the relationships that I've built with my students and their families. I often get from my friends and family why I text parents on the weekends, why I go out to dinner with families, or why I attend my student's birthday parties. The reality is these are the people that I am spending most of my time with, they have become a part of my life, and I love them. Teaching special education has surprised me in many ways, both good and bad. They irk every nerve in my body and push every single button I have, but nothing can compare to the belly laughs they give me or the tears I get in my eyes when I see them do something. My mom tried to convince me not to go into teaching; she also teaches special education now and could not be happier. 

Alexis Venegas

Moderate to Severe Education Specialist

I have a 12-year-old daughter with autism. We have been on the journey since Polly's diagnosis at the age of 2. Her being non-verbal is an everyday struggle as she tries to communicate using her tablet but not being able to fully express what's on her mind and in her heart. I long for the day that she will say, "I love you, Mommy," and most of the time, that hope fades. Now that she is a pre-teen, her emotions are extremes and can leave us all exhausted. In the last ten years, I've learned that being empowered as her mother is what will continue to move us forward in the journey. I got empowered in my friendships, which led to us forming a support group called Moms Helping Moms. I'm motivated to spreading inclusion in the community as a parent coordinator for E-Soccer (Exceptional Children Soccer). Most of all, I'm empowered in my faith as I am able to grow spiritually by attending Sunday service while my daughter attends a Spiritual Resource Class catered to special needs children. Autism has taught me that I am not alone in this journey, and therefore, my child is not going to grow up alone.

Young children are complex of needs and desires. They find themselves fed, clothed, kept clean, but that is only the beginning of what they want. They often say, "I need, I want, Give me" things, attention, and love. However, children with autism see it differently. My son, who was diagnosed with autism, did not point nor try to get objects outside of his reach. He never says Daddy nor Mommy, but he will react when you call his name.
Children's language and vocabulary increase as they grow. Usually, in some cases, when they hear new words, they often use it or combine with other words. In my son's case, it's different. For years his vocabulary was limited, and his topic of conversation is subjected in a short and repetitious manner.
Autism is best synonymous with a word enclosure. Their cognitive, language and social skills are confined within their comfort zone and in line with their repetitious routine. Nevertheless, it is our duty as a parent to push our children with special needs to go beyond their walls one step at a time.

My brother was born when I was 4, and since that day, my identity has been caregiver, guardian, and sister to a beautiful, intensive-needs, ASD boy. I love him with all my heart.

Frank inspired me to become a Special Ed professional. Although it's my job to empower and advocate for kids with ASD, I have a difficult relationship with autism. The extremely variable feelings that come with it, from "autism is a gift, a different processing system, a blessing" to "Autism is a tragedy, and I wish someone would find a cure."

Me, I would rather the overall message of autism be "people with autism are amazing and capable and talented" rather than "look how much I'm suffering; autism has robbed me of my life," just because I think it is a more pleasant way to live. And of course, I would back my brother's feelings because he is the one affected. But I can't know that. Kids as severe as he is-who knows what they want?
Then again, the really severe kids have caregivers who often have strong feelings. Caregivers of those with severe autism would cure their kids in an instant if they could. Not just for peace of mind, but for the sake of their kids, who struggle so much because of their autism.

Would I trade my brother for a neurotypical kid? Never. Would I take away the things that are making his life painful? Of course. Is autism one of those things? I don't know.

What I know is that I will fight for my brother's health and happiness and quality of life until I die. He is my reason for being who I am. And I wouldn't have it any other way.

In March of 2015, we had a healthy precious baby girl, Scarlett. At only a couple of days old, we realized life was not going to be easy for her or us. She was diagnosed with epilepsy, due to a rare mutation of the KCNQ2 gene - associated with the potassium channel in her brain. Scarlett suffers horrible seizures that ultimately result in a trip to the ICU with a machine breathing for her. She is such a warrior, and her strength is truly an inspiration to us. We have recently experienced a breakthrough with a change in medication, and Scarlett just hit one-year seizure-free. Along with seizures, KCNQ2 kids often are diagnosed with autism or experience autism-like behaviors. Scarlett is five and non-verbal; she has a cortical vision impairment and does not eat solid foods. She has sensory issues, always has her hands in her mouth, repetitively claps and pokes at her eye, and potty training seems like a lifetime away. However, even though all the struggles, sleepless nights, and tears, she brings so much happiness to our life. Scarlett loves to be outside in the sun and loves to be tickled. She is the sweetest little girl and brings joy to anyone around her.

 Our godson has autism and is non-verbal. It’s hard, but we’ve learned to go with the flow and work through his behaviors one step at a time. Our mindset is to stay patient through his frustration, sadness, and anger, so we can understand that those emotions are expressed differently by him. And when he laughs, gives big hugs with a huge smile on his face or shows excitement, we feel love and know that he does too! 

 My favorite part about E-Sports is inspiring kids who have been touched by disabilities to play and have fun while supporting them and making sure they are comfortable in their environment. It is amazing to see kids who are not normally super outgoing or social to branch out a little bit and make friends with other kids and with the staff. It is also really fun for me to play around with the kids and have a good time with them, too. I have especially loved playing and having fun with Ian, and it was so rewarding to help him have a good time with the others and with me. 

It's always nice walking into the child's home—a caring, loving, and dedicated mother who wants nothing but the best for her son. I really enjoyed working and learning with them. The lessons I learned spending time with the family shaped my understanding of ABA as well as how much intense love and care, a family can give to their on-spectrum child. At times it was heartbreaking watching the child cry all the time because he would not be able to pass bowel movements. He would cry for hours and not be able to communicate to anyone what was bothering him. I cannot imagine how tough this must have been for him and his mother. Thankfully due to his mother's relentlessness and many doctor visits, with X-ray, doctors were able to identify dual intestinal blockage. Something many people do not think about...how their child is not able to talk or express their needs and pains.