Invisible No More Project

This is my sixth Autism Awareness Month. Each year I struggle with the message that I want to share with the world. How do I even begin?

In 2014, the CDC released new data on the prevalence of Autism in the U.S. The study identified 1 in 42 boys and 1 in 189 girls are on the spectrum.

But really, those facts mean nothing to parents like me. Our kids are our kids. Autism or not. They are silly, beautiful, funny, loving, smart and so much more. They have an Invisible Disability.

Our children have working arms and legs. They can see, hear, run and jump. They look no different than any other child. But the reality is many of them have never made a friend. They have never spoken a word. They have never been invited to a birthday party or a play date. They don’t understand safety or social norms.

This is the reality of Autism. And these are the beautiful faces of an Invisible Disability.

Day One: Jayson

Jayson loves to chop wood, rake leaves, organize his toys, build with Legos and watch TreeHouse Masters. He is obsessed with Pete Nelson. He even wears overalls several times a week and swears he is going to build tree houses when he grows up! He loves to laugh and make us smile.

Oh Jayson, we see you. And you are absolutely amazing. Always remember that.

Day Two: Cameron

Cameron is such a sweet boy. He loves music and playing his keyboard. His special talent is being able to enter a room and find food, even if it is hidden away. He lost all of his words at 18 months, but is working hard everyday to find new ways to communicate with us. His big sister and little brother are his best friends and he loves giving them “Cameron hugs,” AKA walking up to them and lovingly pinching their cheeks. He’s a sensory seeker and loves loud noises, concerts, and riding crazy rides at theme parks. Books are his favorite ” toys” and he could spend hours flipping through each of his books. We are so thankful for our happy, snugly, and silly little Cameron!

Sweet Cameron, we see you. And your smile is bringing joy to so many people. Always remember that.

Day Three: Claire

Claire was born at 23 weeks, 5 days gestation and has been in a battle since her birth. She could only say two word sentences at age 4 and with therapy has come far. She struggles with OCD and her constant need for routine. Neither of these make her life easy.

We deal with violent melt downs and before I knew what they where I suffered many black eyes, busted lips and bloody noses. Recently, she cut a bunch of her hair but didn’t realize why it was not OK and why it was dangerous. She doesn’t show excitement and joy in the same ways a “typical” child does. She doesn’t understand a lot of things and at times it makes life extremely difficult. But, we are truly blessed to have such an amazing princess to call our own.

Not every day is perfect but we remind ourselves that for every struggle we have…hers are way harder. Her favorite thing in the world is her Froggy. It’s a sentry buddy that has been discontinued but I manage to find them on eBay for more then I would like to spend but she can’t be with out it. She can’t sleep if she doesn’t have it and she takes it everywhere. We have 2 now but I try to keep extras on hand. It’s her safety, security and joy. Froggy is her best buddy.

Sweet Claire, we see you. Keep fighting little girl. You are so loved. Always remember that.

Day Four: Ariana

Ariana was born at 24 weeks gestation. We have been Ariana’s parents since birth and adopted Ariana. We thought she was going to be medically fragile but instead her body grew strong but her mind had different plans. She was diagnosed with autism at 24 months. She is severe.. dealing with OCD, ADHD and other autism behaviors. She is in 4th grade in special Ed with an IEP since age 3. In a positive light…There is an innocence to our autism kids that they never outgrow.

Today, Ariana is almost 10 years old. She started her happy obsession with pianos a little over a year ago and even self-taught herself to play Mary had a Little Lamb and Chopsticks. She brings her keyboard everywhere! It goes on the bus with her to school…to doctor and dentist appointments and she sleeps with her piano over her head! No batteries at night, of course. She was even a Piano Girl for Halloween. Ariana plays beautiful sounds that sit perfect in her mind…and that is all that matters.

You are amazing Ariana! We see you! Keep playing and sharing your music with the world.

Day Five: Elijah

Elijah is our second born little boy. I am thankful that we had a basis for comparison, because until recently, maybe the last 6 months, most would have just thought he was a late bloomer. I can’t tell you how many times we heard “Just wait and see.” “See how speech therapy goes.” “He’ll talk when he’s ready.” But over time some of his quirks became more noticeable.

He likes to jump and flap his hands when he’s happy! (We lovingly call it his happy flappy dance!) He spins in circles until he’s dizzy. Recently, he started putting his food items in the shape of a circle on the table. I am fascinated to see him develop some of these little habits and it makes me so intrigued by what’s going on in that beautiful mind of his!

His favorite things are bubbles, fruit loops, swinging, playing outside, and playing with my hair! He’s been playing with my hair to fall asleep since he was nursing as a baby. It’s something that he still finds comfort and joy in doing! He’s a sensory seeker and loves loud noises and motion! He is a sweet little boy, with a gentle demeanor. He has taught me more than I thought I could learn about love, patience, and acceptance!

Sweet Elijah, we see you. You are teaching people what is really important in life!

Day Six: Reece

Reece was diagnosed with autism at age 11 and has had an IEP since kindergarten. He has the kindest heart and is a caring and truly sweet boy! He is my ray of sunshine and makes us laugh every single day. He loves animals; especially dinosaurs. I feel so blessed to be his mama. 

We see you Reece. Your smile is contagious and your laugh can light up a room.

Day Seven: Riley

Riley was diagnosed with ASD in June 2016. He was always such a happy baby. He loved to be cuddled, he loved lights and he loved music from day one. He sat up, crawled, walked, all on time, but my little boy never clapped his hands or waved bye bye. His eye contact was bad, and the words that he did say all disappeared by the time he was 18 months old. My little boy went silent, we lost everything. This has to be the scariest thing I have ever been through. After a long assessment process he was diagnosed, and we finally had answers.

Riley is now 3 years old. He loves cars, chocolate and Mickey Mouse. He likes to spell words with his fridge magnets and LOVES Disney. He hums and flaps his hands when he is excited and his smile could light up the darkest room. He loves to spin in circles and he loves to be dizzy. Music makes him so happy, he loves to hum along to songs, he loves to dance and he loves to hear us sing to him.

Riley is non-verbal, but is the funniest little boy I know. He really is a cheeky chap. He makes me the proudest mom in the world every single day. He is my real life superhero.

We see you Riley and please know that you are changing the world, simply by being you!

Day Eight: Molly

Molly was just diagnosed with Autism in March 2017. She’s had a speech delay since before she was two. She had some words but lost everything at about 18 months or so. Once we started Birth to Three evaluations, she had gross and fine motor delays as well.

Molly LOVES Tinker Bell and Dory! We watch Tinker Bell many, many times a week. She puts puzzles together and loves little figurines. Her smile makes everyone smile and her hugs are a great way to start my day. Many say her laugh is infectious.

We see you Molly, the BRAVE. And you are so loved.

Day 9: Kylee

Kylee is 4 and non-verbal. She has been diagnosed with ASD, SPD and OCD. Kylee loves to be outside and also enjoys riding horses. Her older 8 year old sister is her everything. Even though Kylee can’t communicate through speech, she tries to mimic everything her older sister does. She is all about some musicals. Music seems to reach her soul and keeps her calm so, of course, we are obsessed with Disney movies.

The thing that makes Kylee special is her ability to draw you in and melt your heart. Her smile is so contagious. Another thing that makes her special is her ability to analyze things and problem solve. She will intensely watch you do something so until she figures out how to do it herself.

We see you Kylee! You are one brave little girl. And, you loved by so many people.

Day 10: Tara

Tara is a lovely and happy 21 year old. She was diagnosed with moderate Autism around age two.

I can focus on those trying early years, but I would rather showcase how far Tara has come. Tara had a wonderful experience in the public school special education system. I truly didn’t know how Tara would sit still or participate in school but she did. Tara loved school because her teachers made sure her day was stimulating and they incorporated time for Tara to take frequent breaks.

With lots of support staff, Tara enjoyed attending two high school winter formal dances and prom — with dates!

Tara will be graduating from the TESA program in June, and she is working with VRS to possibly work in a coffee shop with a job coach or do volunteer work.

Tara lives a happy life with her loving family. She enjoys music and 1970’s sitcoms. Tara has an amazing memory and she can recall everyone’s birthday, anniversary–you name it!

To all you young parents wondering about your child’s future: It can be awesome!

Thank you so much Tara and mom. We see you Tara! You are an amazing young woman.

Day 11: Sophie

Sophie is our beautiful and sweet mermaid.

She was diagnosed on the spectrum at age 2 1/2. At that time her Autism was mild and she was still verbal. At age 3 1/2 she had a huge regression and lost all of her speech and many other skills. She was re-diagnosed with severe Autism. No doctor can tell us why she regressed so much and so late. Sophie struggles to control her body but I know that she understands way more than she lets on. We are working so hard to get that speech back and all the skills she lost.

At age 8 Sophie is still nonverbal and on the severe end of the spectrum. As her mama I know she understands way more than she can show or express. She is a sensory seeker and loves squeezes, hugs, kisses, and tickles! She enjoys swimming, jumping on a trampoline, and eating. She could eat all day! Being outside or in the water is her calm place.

Sophie’s smile lights up our world. She is absolutely adored by her mama, dad, sister, and brother. Sophie makes our lives more full and anyone who knows her is extremely blessed!

Day 12: Simon

Simon is 13 years old and was diagnosed at age two with nonverbal Autism (PDD-NOS). Simon may be nonverbal but his expressions speak volumes. He loves to draw, watch movies, blow bubbles, dance, listen to music, eat red velvet cake and be outside. He thrives on structure and routine. He exceeds most teenagers by doing his chores without being told or be reminded. His chores include taking out the trash, washes dishes, feeding our red golden retriever Zachary, and cleaning his bathroom.

Simon knows a lot of sign language and I have fought school and therapists for years and finally got them on board to start using an augmentative app on his iPad. We are so excited to see him thrive with it.

Simon has a brother named Sage that is 11 years older than him and their bond is immeasurable. Honestly, Simon is our hero. He doesn’t care what other people think. We could all learn so much from him. He is beautiful inside and out and his laugh is contagious.

We see Simon! You are teaching the world so much just by being you!

Day 13: River

River was different from the very beginning. From two weeks on, he had the most severe colic our pediatrician had ever seen, and cried for up to 16 hours a day. He slept through the night very early on because he exhausted himself from crying all day long. He had to be held 24/7 and would scream at the top of his lungs if you dared to put him down or try to wear him in a carrier.

When the colic subsided around five months, I had what seemed like a typical baby for around two months. At seven months, my mom mentioned she noticed that he didn’t turn when we called his name, and that his eye contact was not consistent. These were really the first signs for us.

Between seven and 10 months, River started to say words, and then subsequently lost them. He also ate normally until 10 months, when one day he suddenly refused all food unless it was crispy and beige. We know now this was the sensory processing disorder creeping in, which to this day is still the severest aspect of his autism.

At around one year old, River started to develop one ear infection after another. He lived on antibiotics. Since age two, River has had two sets of tubes and has had his adenoids and tonsils removed as a result of the constant, severe ENT issues. Our pediatrician at first suggested the ENT issues may be causing his developmental delays, but after his surgeries the symptoms didn’t ever improve, so at that point we knew autism was the only answer.

We pretty much knew for certain six months before he was actually diagnosed and started OT and speech therapies on our own in the meantime. River was ultimately diagnosed with autism by two days before he turned two.

River will be five in August, and he is now in his second year of full-time Autism Pre-K. He also does up to 20 hours per week of ABA therapy, horseboy therapy and music therapy. He receives OT and speech therapy through his school as well.

River stims for a good part of the day mostly with hand fidgeting or humming these days or even rewinding the same 20-second scene of his beloved Bubble Guppies about 1,000 times. He is still non-verbal. His greatest loves are his ipad, swimming and jumping on the trampoline.

In February, we began seeing a board-certified pediatrician who is also a holistic doctor, and began the path of biomedical treatments. We have done a ton of testing and have implemented close to 20 supplements as well as B12 shots, with more options to come down the road. We are slowly starting to see River emerge from the “fog” of autism.

If there is a God, I believe River is his greatest special effect. Even people who don’t like kids, love River. It’s impossible not to. I know I am biased, but first of all he is so cute I can’t even take it. Even more, it’s about the level of joy he emits all day, every day that just draws people into him. I wish I could be so joyful, and I wish I could love things in the same way my son treasures something like a random business card he finds in our mail pile. He has put so many things in perspective for us, he has shown us how strong we can be and that even the smallest of milestones deserve the greatest of celebrations

Day 14: Ryder and Dominic

Dominic, my eldest, will be five in August. He was diagnosed in 2014 shortly after his second birthday. I just had a gut feeling. Mostly because my husband had a nephew on the spectrum and I knew he and I both had certain “quirks”. I called Dominic my Chihuahua. He hated other children. He was more than okay around most adults but preferred ones he knew the most. He was also actually more vocal than kids his age. He was saying words like “garage” & “castle” before he was two. His first word was “wow” and then “giraffe”. He had severe sensory issues that affected his diet. We actually couldn’t leave the house. Yet, no one listened. He always wanted to be held, but his eye contact was lacking. He would have meltdowns that lasted 30 minutes over the smallest things. Lots of flapping, lining things up. He was also aggressive but only to himself. It was hard to diagnose him though because of his extensive vocabulary. I mean the kid was counting to 25 at two years old and knew what an octagon was. I still get that confused sometimes.

He is now almost five and has come a long way! He added more foods to his diet and graduated speech last spring. He receives an IEP and is in K4 right now. We can carry on a conversation with him but only to a certain point. He has a lot of anxiety which turns into frustration and behavioral situations that we address the way we have learned. I learned a long time ago that in order to get Dominic to understand you, you have to be on his level of thinking in every aspect. He’s still having a hard time socially but is making improvements every day. He’s much easier compared to his brother Ryder.

We received Ryder’s diagnosis in January. He is currently in Occupational Therapy, Physical Therapy, ABA therapy and receives early intervention. Ryder is not even close to where Dominic was at his age. Ryder isn’t putting one word together. He’s very picky with his foods and very sensory avoidant. However, he’s constantly moving. We have almost zero communication. Ryder hardly ever wants to be held or talked to. He adores his brother. But that’s about it. We are trying to learn how to get Ryder to let us into his world although it’s very hard because we are used to Dominic. All kids are different but I think it’s even more true for kids on the spectrum. Ryder is aggressive and has already started hitting me. He has great eye contact most days but prefers to be left alone. He’s fixated on one show right now, Walkykazam. Things with Ryder are not easy. For any of us. It’s a daily struggle.

We see you Ryder and Dominic. Keep smiling boys! I would also like to give a shout out to this Warrior Mama. You are absolutely amazing!

Day 15: Kameron

My son Kameron is 8 years old and he’s in the 2nd grade. He is my oldest and has a younger sister who is five and also has special needs (CHD congenital heart defect). Kameron was diagnosed with Autism at 3 1/2 but pre-diagnosis received Speech Therapy. It was actually his therapist who suggested he be evaluated for autism. He is verbal but not speaking full sentences just yet and thankfully can communicate most of his needs and wants. He is a great big brother and loves his sister dearly.

Kameron loves making new friends, going to school and playing with others. He enjoys finding sticks outside and breaking them apart. He likes being outdoors but also enjoys playing video games and playing with his action figures (Spiderman, batman, the hulk). Other favorites include playing with sensory toys and making tents. He also really enjoys riding public transportation! I don’t have a car at the moment so it works out great that he enjoys it!

We see Kameron! You are teaching the world so much just by being you!

Day 16: Gage

My son Gage is 6 1/2 (Picture Right). He was diagnosed with high functioning Autism at age four. Gage started early intervention services at 2 ½. He was non-verbal and had fine motor delays. We did not think to have him diagnosed for Autism because he always enjoyed people and gave a lot of great eye contact. It wasn’t until his younger brother Kruze was diagnosed with mild to moderate Autism at 22 months that we learned more about Autism and knew we should have Gage diagnosed as well. It was then that his sensory needs made sense to us.

Gage loves wrestling and snuggling, but hates loud noises and getting his hair wet. Gage enjoys building train and car tracks and wants to be a car designer when he grows up! He started talking between 3 ½ and 4 and is keeping up wonderfully with his kindergarten class. He is a loving, kind, and sweet boy who is always being silly (he says, I’m just trickin on you mom). He loves laughing and playing.

Gage is truly kind, and cares about helping people, even though he’s very blunt. He watches over his little brother Kruze with such care knowing Kruze is ‘different’…Even though he’s a bit ‘different’ himself. His future has no limits! The sky is the limit for Gage! He makes us all so proud every single day.

We see you Gage! You and your brother are so loved!

Day 17: Aiden

I would like to introduce you to Aiden. I found Aiden to be the most amazing, delightful, adorable, interesting, and coolest kid. Because I fell in love with him, I asked his mother to share more about him. Here is a quick blurb about Aiden. Click over to my blog to read his full story and to see some of his amazing costumes! I promise you will be captivated by her stories and his pictures.

His mother also touches on how hard it is for Aiden when peers call him weird for dressing up and playing pretend. He is 12 going on 13 and there aren’t many kids his age running around in costumes all day. In his mind this is still a perfectly acceptable way to play. He can’t understand when his cousin’s come over, why they don’t think its fun to dress up and pretend.

“Aiden was diagnosed with Autism, severe ADHD, a sleep disorder, and OCD when he was four years old. It was a long journey to that diagnosis and I somehow believed that once we had a confirmed diagnosis everything would be better. It wasn’t. Nothing changed. We just continue to do what we always have. Therapies, tears, meltdowns, prayers, more therapy, ups, downs, progress and regression. I imagine every special needs family goes through the same cycle of emotions. But through all of it I continue to realize what an amazing person Aiden is. That’s right. A person. Not a diagnosis. If you’re lucky enough to get close to a child with autism then you know how deep they love. How creative they are. How smart they must be to change the world around them so that they can feel comfortable and happy.”

Read Aiden’s full story: https://www.findingcoopersvoice.com/…/aiden-a-story-of-cos…/

Day 18: Caden

Caden is 12.5. He was unofficially diagnosed with Autism around age five. He was different out of the gate. He didn’t want to cuddle or nurse to sleep. He’d wake up with terrors and not let us comfort him. He continued to have sleep disorders complicated by autism and apnea.

We fought his school for help for five long years. I finally made the decision to homeschool him and then eventually put him in a new school district. Best decision we ever made! He now feels smart!  Caden is very open about his autism. He has his service dog Toby who has changed his life.

He also loves baseball. Most people on the field have no idea Caden has autism. He has changed how we parent so very, very much.

Caden has a kind soul. He loves to help younger kids and volunteers in the all-inclusive class at school. He enjoys it. He has a tougher time fitting in with kids his age socially, but wants to so much.

Caden also loves animals. He wants to rescue dogs when he is older.

Caden is going to go out in the world and accomplish so many things. When you’re 12 in a 9 year old mind, you stand out. When you’re 25 in a 20 year old mind…not so much. We will get there and he will be happy and successful. I am thankful to have followed him on this journey.

Day 19: Matthew

I am excited to introduce you to Matthew. Matthew is a teen with Autism who is thriving and is a HUGE inspiration for me. He’s an all around great kid! Matthew is unique in the fact that he shares his story on his Facebook Page, Matthew’s Autism Journey at Facebook.com/mattsasdjourney. I encourage you to check him out! He will definitely make you smile!

“Hi everyone! I’m Matthew. I’m 16 years old and I’m autistic. Growing up autism has brought me many challenges but also many rewards. I was diagnosed at age 1 and a half. At the time there weren’t many services available where we lived so we had to move across the country to get a special autism program for me in Calgary, Canada. The program helped me a lot and today I am verbal, I get good marks in school, and I am finally starting to make friends! One of the biggest challenges for me has been the social aspect of autism; I’ve always had trouble making friends. It’s taken me years of hard work to work through it but over time it is getting better. I now have lots of friends I talk to in my classes and on social media.

My dream is to someday be an international advocate for people on the spectrum. I have a Facebook blog page Matthew’s Autism Journey at Facebook.com/mattsasdjourney and I would like to invite you all to come and follow my journey. It truly would mean the world to me!

Day 20: Ana

Ana is 3 years old and was adopted, along with her twin brother. We noticed she struggled with routine changes, made little eye contact, never slept, and had lots of “quirks” that her brother didn’t have (like walking on her toes and constantly spinning in circles). She was diagnosed with Autism Spectrum Disorder in March of 2016 (at age 2) and ADHD in March of 2017. Although she does say some words, she is primarily non-verbal.

Ana loves being outdoors. She has lots of energy and keeps us on the move. Some of her favorite things are playing in the dirt, going for walks, riding bikes, climbing trees, swinging, and having wide open spaces to roam and run! She also loves to look at books and family pictures. Her favorite book right now is “You Choose” from Usborne books. She is a huge animal lover and our black Labrador Retriever is her very best friend. She loves music, singing, and dancing.

She is such a happy little girl, who gives the best hugs and kisses. She has an infectious laugh and her squeals of excitement can bring a smile to anyone’s face. It’s a joy and a blessing to call her ours!

We see you Ana! You’re happiness is contagious!

Day 21: Sterling

Sterling was completely non-verbal up until last year. His original diagnosis was PDD-NOS. Recently that has been changed to Intellectual Disability. While not formally diagnosed with ASD, he has been screened for Autism and we are seeking further testing this spring as he shows many signs of being on the spectrum.

Sterling is an amazing little guy with high energy, drive, and a huge sense of humor (which comes out at all the most inappropriate times). He is clever and smart especially when it comes to getting his way. Sterling also shows a lot of empathy and compassion which I believe our pets have taught him in a way that no human could. Sterling also has an amazing memory. He is a friend to everyone around him.

Sterling loves Army Men, Police Officers, Firemen, and basically anyone in uniform. From the moment he wakes up to the moment he falls asleep he is going, going, going! Everyone always comments on his happy smile which he wears proudly everywhere he goes. The picture I chose shows his creativity and imaginative mind and also his amazing memory and determination. He had been trying to get a certain marker from his artist sister for days. She had hidden it many times, but the other morning while she was still sleeping, he saw the opportunity to snatch it. So here he is in his full “army man” glory. He created some black tactical gloves, and of course had to have protective eye-wear for his top secret mission! We love this boy!

He is extremely good at running, and we can’t wait for him to join the Special Olympics. Most recently he slipped from sight and ran a 1/2 mile from home, barefoot, before I caught up to him. He had a huge grin on his face and two quarters in his hand; he was going to the store to buy a treat.

We see you Sterling! You are so amazing!

Day 22: Vegas

Vegas is five years old and has Nonverbal Autism. He also has 15q13.3 Microdeletion Syndrome. He uses an Accent 1000 with the LAMP program to tell us what he wants to eat (90% chips) and to notify us if the iPad has been out of his sight for more than about 60 seconds. 🙂

He is full of joy and brings happiness to everyone who meets him (as long as they don’t mind noise). He loves water, swinging, and his iPad. His favorite activity is drumming on the furniture.

Currently, our main goal for Vegas is to improve his communication. Our family can typically understand his needs but for anyone outside our family, its pretty much impossible. Potty training would also be a great accomplishment too. Right now our family is very focused on doing everything we can do to help him. We don’t want to change him…we just want him to be happy and healthy.

I wish I could send the outside world to therapy to understand my son. But, that’s not an option. So, we try to help Vegas understand the world better.

I don’t know if Vegas will ever drive a car, go to college, or live on his own. And that’s OK. I just want him to be happy wherever he is doing whatever he wants.

We see you Vegas!

Day 23: James

James was diagnosed at age three with Autism Spectrum Disorder. Long before James’ diagnosis we knew he was different. We are very proactive parents with a keen focus on becoming knowledgeable in all things related to our children.

When James was two I started researching how to help children on the spectrum, even though he wasn’t diagnosed, I knew deep down in my Mummy tummy that James was in fact autistic.
With my new found knowledge I started implementing activities at home to aid with his eye contact, functional play and social interaction.

When James was two and half years we added in a Occupational Therapist and Speech Therapist to our little team.
Finally diagnosed at age 3, nothing really changed. I didn’t have some magic person telling us what to do next we just had a label to help us get the assistance we needed.

Along the journey I had read, ‘heal the gut and you can heal the brain’ somewhere….
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Then I started digging deeper and deeper into this gut/brain realm and have NEVER looked back! We started adding other people into the team immunologist, gastroenterologist, dietitian, naturopath and integrative doctor. I researched probiotics, supplementation, chemicals in our environment, diet protocols.

The same month James was diagnosed with ASD we had his bloods drawn, urine tested, stool samples taken. We found some very interesting things…. James was deficient in all ‘those’ vitamins documented to be linked with autism. James also had parasites and a gut full of bad bacteria. We started an official gut health journey with James just over one year ago.

When James was diagnosed he was non verbal, he had no functional play, he had no receptive or expressive communication.

Today, I have a verbal, communicative, receptive, intelligent young man who just continues to thrive. James has deficits, he isn’t yet toilet trained and he doesn’t yet eat food, he gets incredibly overloaded and likes to control like a military Sargent.

Take what you will from our journey. I am a believer in good gut health. I am on the ‘dark side’ as they say, shunned by many autism community for heading into this realm.

For me it wasn’t about slapping a label on James’ head and sitting back and watching and waiting. James is supported in all areas of his life. We do ‘whatever it takes’ to ensure his voice is heard, that he succeeds in life and is included in a world that he wasn’t necessarily designed for.

We see you James!

Day 24: Jayden

Jayden is nine years old and a wonderfully weird little guy. We could tell he was different from the time he was three months old. It was until he was almost two that we realized it was autism. He started off nonverbal but started talking at age four. And he hasn’t stopped talking since!

Jayden is the sweetest boy ever. He loves Minecraft and the weather. He spends many hours during the day watching the radar on the local weather station and tracking storms. He wants to be a meteorologist when he grows up.

He is hilarious to talk to because he is so brutally honest. He definitely steals the hearts of his teachers. Something about the way he talks just makes you smile. He also just learned to skate this weekend and he loved it.

We see you Jayden!

Day 25: Lenorah

Our daughter Lenorah is four years old. She was diagnosed with Autism and Mixed Receptive Expressive Language Disorder in May of 2016. We noticed that she was a little different when she was two years old. She had poor eye contact and did not respond to her name. She talked all the time, but speech therapists were quick to point out that her words were Echolalia (scripted) and not spontaneous. We received early intervention services, and later began preschool through the Head Start program.

Preschool opened doors for us to secure additional speech and occupational therapies through an IEP. We just began private ABA therapy this week and are hopeful for the future. Our biggest challenges right now are lack of safety awareness, no potty training, and her language is still limited which sometimes leads to meltdowns or tantrums. Everyday activities like grocery shopping or going out to a restaurant are very challenging. But, overall speech therapy seems to have had the biggest impact so far, as she has learned to answer questions and call people by their names.

Lenorah is super smart and enjoys learning. She knows all her shapes, colors, letters and numbers. She loves television and technology and can find just about any cartoon on You Tube. Her favorite shows right now are Dora, Doc McStuffins, Octonauts and Mother Goose Club. She really enjoys rides in her Daddy’s Jeep and listening to music. She shares her Mother’s taste in bands including a love of the Red Hot Chili Peppers. She is quick to inform her Mom which songs to “thumbs up” or “thumbs down” on Pandora radio and loves to sing along. Lenorah is a very affectionate little girl who does not know a stranger. No matter what kind of day she is having, she will always have a hug for you!

We see you Lenorah!

Day 26: Neyland

Neyland was diagnosed with autism the spring before kindergarten; however, he was attending speech and occupational therapy starting around age two. We started to notice signs of autism around 18 months. I remember walking behind him at soccer practice, and he was humming and flapping but so happy. I never really thought much of this until an older couple walked by him and gave him an odd look.

I began my research, and it hit me that he was showing signs of autism. I can honestly say it was one of the most emotional days of my life. I felt hopeless, but as a result our family has not only grown so much from him but also become stronger. He has taught us all about what is important in life.

Neyland is an extremely loving boy who enjoys cub scouts, Ninja Core, and Donkey Kong. We are extremely blessed because he loves to travel to the beach and go to amusement parks. I don’t think it is possible to love anyone more than his entire family loves Neyland.

I am the parent, yet this child has taught me more about life than I could ever teach him. He has a smile that will light up a room and a personality to match.

We see you Neyland!

Day 27: Ian

I would like to introduce you to Ian. I have never met Ian yet I feel like I know him. I found his mother on Instagram and instantly felt like I’d found my soulmate. We are the same in the sense that we both share the struggles of raising a child with severe Autism. Her words are so powerful and I teared up as I read them. She is a warrior and I am proud to call her a fellow Autism Mom. His mother says:

“Ian is a beautiful 17 year-old boy with bright blue eyes and a contagious smile. When Ian was little people would look at his snow white hair and rosy cheeks tell us he looked so “normal”. Now people tell us “he’s so handsome”, only their eyes tell us “if only…” See, Ian is our 1 in 45 or whatever the statistics are these days. Ian has severe autism as well as a seizure disorder.

He was officially diagnosed six months after his third birthday, only, I already knew. I had known for awhile and somehow the word “autism” was both freeing and heartbreaking at the same time. We began seeking treatment and mourning the life we thought our son would have.

14 years ago our our lives were changed in ways we couldn’t fully comprehend, in ways we still can’t fully comprehend. 14 years ago we began a journey that would test my heart, might, mind and strength. There are days that I don’t think I can win the fight I am up against and there are days that I feel as though my heart might burst with the love I have for Ian. His life has brought me pain, tears, sadness and frustration but those feelings could never overshadow the feelings of joy, laughter, happiness and love I have for him. I learned early on that autism is just part of who Ian is, not all of who he is.

Ian is funny, happy, bright, beautiful, mischievous, loving, quirky, strong-willed, messy, a fighter and he loves to tease. He loves trains, cars, puzzles tools and people. Oh, how my son loves people!! And people love him. Ian has taught me to be stronger than I thought I could be, braver than I thought was possible, more patience than I knew existed, to love unconditionally and without judgment and I truly believe he is making this world a better place just by being in it…Autism and all!”

We see you Ian!

Day 28: Gwen

Gwen is a beautiful, happy, nonverbal, autistic ten year old. People just seem to be drawn to her.

She’s working very hard to find her voice in this world. Her voice today consists of repeating Elmo (her favorite), Barney, and Baby Einstein videos. She’s a sensory seeker and knows no danger. She loves roller coasters and is definitely tall enough to ride them. She loves the zip line we have in our backyard.

When Gwen was three years old she stopped eating and wouldn’t put anything in her mouth except for a Nuby sippy cup of milk. After a few months of that and me freaking out, she had a g-tube placed so she could finally start receiving some nutrition. She went through extensive food therapy and after 5 years it was removed. She’s had to learn to eat again. She eats by mouth now but it’s the same foods and it’s a cyclical cycle. She loves Popsicles and cheese.

She loves a good squeeze and constantly seeks deep pressure. Her personality shines through and it’s funny to see her spunky attitude at times. Oh boy, she’ll definitely let’s us know when we’ve messed with something she’s placed somewhere or turned one of her five devices off or to a different thing. She has an eight year old sister and six year old brother that are figuring all of this out with us.

My hopes for the future are for her to continue to improve and find that voice. She’s improved so much since her initial diagnosis eight years ago. I truly want her to be happy and my goal is always to make sure I give her the chances to find that happiness.”

We see you Gwen!

Day 29: Garrison

Garrison is almost 5 years old and has severe, nonverbal Autism. We started noticing the signs at 9 months and he was officially diagnosed at 23 months. The very first sign we noticed that seemed off was how he didn’t respond to noises. We actually thought he was deaf. He now responds to his name and a few simple requests at almost five years old. He didn’t sit up until he was ten months old, he never had a big interest in people until he was about two other than his dad and myself. He has a list of other diagnoses I will not even begin to list. It seems ever growing. It’s been a very long journey, as he has a sister with high functioning autism. We get to see both sides of the spectrum. But we would not trade these kiddos for the world.

Garrison is a very happy, loveable little boy! He can make anyone smile when he is excited about something…his smile and giggles light up a room. We’re just now getting actual words with meaning from him after months of therapy. He is an animal lover. He loves his dog Alice and his two cats and his goldfish. He likes blocks, dvds and the cases, popsicles, painting, and most of all swinging. It’s his comfort thing. That boy would swing for hours if we let him. He also has a huge interest in watching cheerleaders. His sister cheers!

But he does have a downside like every other child on the spectrum. He is a runner. Our doors all have alarms on them and our gate is locked at all times. He will sneak outside at any chance he gets and run straight to the road. And, he has no sense of danger. He also has meltdowns daily over small things. Mostly transitioning from the car or outside to in the house. Due to the wandering and anxiety he is my little sidekick always with mama, everywhere I go. You never know how much you trust a person until you have to let them watch your autistic child.

My main hope is that one day he is able to be out of hands reach without having to worry he will run away or get injured. We also hope for him to be able to communicate enough to tell us when he needs or wants something and be able to take care of his basic needs, dressing himself, bathing, preparing a snack or drink, and last but not least potty training!! Lord yes, being potty trained would be a huge accomplishment.

Wee see you Garrison!

About Me
About Me

Hi, I'm Kate. I am the mother to a little boy with severe, nonverbal Autism. This is a glimpse into our heartwarming, sad, scary, funny, loving and secret world. Check out my video tab to hear me ramble about Autism.

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