I Would Not Change My Son for the World.

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“I would not change my son for the world. I would change the world for my son.”

I came across this quote the other day and it reminded me: This is why I share my son’s story. There is so much about his autism experience that is out of my control. What I can do is spread awareness and hope that it leads to a little understanding, patience and compassion.

Many people are unaware of the reasons behind some “autistic behaviors”. Autism affects communication, social development and sensory processing, with the degree to which these areas are affected being unique to each individual.

Sensory processing difficulties are really hard to understand because the triggers can be invisible to neurotypical people. I am slowly learning more about the triggers and sensitivities in Wilson’s world.

He is very sensitive to bright lights and certain sounds. He has left the room screaming or cowered in my lap over noises that a random toy will make.

He is very particular about what clothing he will wear and what foods he will eat. He often studies toys or objects by turning his head completely sideways or upside down.

He seeks movement and pressure and likes to bump into people or be wrapped up tightly in hugs or blankets.

He is learning ways to cope with his anxiety and sensory reactions, like chewing on something or taking deep breaths. Sometimes singing a familiar song will help.

Many people with autism find comfort in routines and repetition, just like Wilson. He says things repetitively, plays with toys in the same manner or repeats little scenes over and over. He gets irritated if we take a different route to therapy or home. His memory is truly incredible.

When his sensory system is overloaded, he breaks down. His first reaction is to scream. His screams have reached an all-new high pitch. He usually becomes limp, hits, or tries to run away. Sometimes he’ll hit himself in the head, slam doors or push furniture down.

People stare and make snarky remarks. Luckily, this only bothers my husband and I.

Wilson doesn’t read other’s emotions well or understand the comments. Someday he will though.

So let’s talk to our kids about how all their friends are unique, and that it is a beautiful thing. How we all learn at a different pace, and speak in distinct ways, but can still have so much in common with one another.

All children could benefit from a friend to help them overcome challenges and build confidence and self-worth. Let’s teach them acceptance and inclusion.

Let’s change the world.

 

(originally posted: April 16, 2018)

The Fear of Wandering

Wilson farm.jpegLast night, I saw my sweet boy for the first time as a grown young man. My dream was so real. Until now, I really hadn’t been able to picture him outside of toddlerhood. I kind of blame that on autism. Maybe it’s the language barrier between us, or the discomfort of not knowing exactly what his future looks like. For some reason I just couldn’t picture him, or didn’t allow myself to try.

He was big, taller than me. Happy and gentle. And strong. He clung tightly to my arm as we walked through a busy hotel lobby, I could tell the noise and new space made him uneasy.

I was so proud of him. He had grown so much and made progress beyond my expectations. As a family, we were enjoying our time outside at the hotel pool when the all-too-familiar panic set in.

I lost him.

I frantically ran through the busy hotel, the pool, the restaurants, and lobby searching and asking strangers if they had seen him.

The panic really set in when I realized that no one seemed to meet me at my level of concern. It wasn’t a missing child, after all. I was looking for a grown man.

A teen annoyed with his mom, or a young man running an errand, a miscommunication, they probably thought. But my young man was still a boy, really, and he will not find his way back, and certain lights and sounds literally cause him pain, and he takes almost everything literally and he could walk right into traffic…but how do you explain all of that when you are hysterical?

This dream topped all the heart-pounding ones of the past: the missed college exams, waitressing in the weeds, falling. I’ve had a pit in my stomach all day about it. It was just a dream, but one that very easily could be our reality.

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Wandering (or eloping) is a concern that parents of children with autism deal with long after the toddler years.

That fear may never go away. And that’s ok.

We will continue riding the waves of autism with our sweet boy. The highs, the progress, remind us to remain hopeful. The regressions keep us resilient. They keep us fighting for better.

I am so thankful for the recent progress we’ve seen in our boy. Even though this dream ended with a large dose of our autism reality, it gave me the gift of a little glimpse of who he can become. And I am more excited than ever.

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Born Rad

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The R-word is done, guys. Bye! see ya! Broaden-your-vocabulary-never-to-be-used-again. Gone.

Some friends and I went to an amateur comedy show last night. It was really fun until the last comic starting making fun of people with special needs. And used the R-word repeatedly.

I was beyond disgusted that ANYONE would think his jokes were funny.

I came home to see my sweet little guy asleep in his bed and I just fell apart. I can’t understand how anyone could think this perfect little human’s very real struggles are funny.

I’m not going to start listing off all the things my son may never do because of his particular neurological design. That’s a rabbit hole I steer clear of on the regular. But I damn sure hope he is never in a room like I was last night, where people with different abilities were the punch lines.

October is National Bullying Prevention Month and this is a perfect reminder of the roles we play and the influence we have on others.

Everyone laughing at those crude jokes were just as much a part of the problem as the man spewing them.

Stand up for what you believe to be right vs wrong. Use your voice. Use your actions. THEY MATTER. I promise you will regret your inaction more than taking an opportunity to stand up for what is RIGHT.

 

Our Tribe, I’m So Thankful for You

While motherhood has certainly been my greatest adventure, the vulnerability in becoming a mom, and an autism mom, has been a substantial challenge for me. I found myself, for the first time in a long time, in need of help. A lot of it. This has never been something I’ll easily admit, ask for, or receive.

Thankfully, I am surrounded by the most patient, kind and generous humans who constantly offer their support.

Our friends and family and friends who are family, you open your homes to our curious five-year-old to redecorate, climb on furniture, your laps and shoulders and oblige him in his relentless requests to be chased in circles.

You continually say “hi” and attempt to engage with our little man, even when you know he will likely not hear you and walk on by.

Somedays he will hear you, and see you, and you will get to see his sweet face light up like never before. You love our children like your own and you will never know what that truly means to us.

I am so thankful for you.

His teachers, behavior interventionists, doctors, therapists and caregivers, you are patient, loving and recognize the little stuff can be very big stuff for him.

I am so thankful for you.

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His BCBA, you were the first one to tell me that it was going to be OK and make me believe it. You remain so calm through the storms. You help us set goals and teach our little man how to crush them.

I am so thankful for you.

His little buddies, you have the most innocent, loving hearts. You don’t see “different”, you just see him. You may be few, but you are such an enormous light in his life.

I am so thankful for you.

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The sisterhood of autism moms and special needs parents, the connection and community I have found in you is invaluable. I know my words don’t resonate with everyone but they might with you. Hearing your stories of struggle and achievements that come in every shape and size has been a constant reminder to always come back to hope.

I am so thankful for you.

All of our friends, family and friends of the family (some of whom I haven’t seen in years), who comment, message, and share our story. You encourage, support and lift us. When you share our story you are spreading autism awareness and acceptance.

I am so thankful for you.

Charlie, aka little sis, you know best how to drive your brother completely bonkers, the exact buttons to push, but you also love, include and protect him. You aren’t afraid to get right up in his face so he sees you, so he hears you, and you would never go to sleep without giving him a hug goodnight.

I am so thankful for you.

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Our little one’s Daddy, you are strong when I am weak. You always support new methods, diets, and my harebrained ideas but aren’t afraid to question when something doesn’t feel right.

You keep him happy and safe, which isn’t easy but is our greatest purpose. You know him and you love him so well.

You stand with me, to advocate for him, to fight for understanding, and you remain there through our proudest moments and in our weakest.

I am so thankful for you.

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My sweet boy. You adore the simple things. You smell, touch, taste and intensely examine. You’ve made me slow down and pay attention, whether I wanted to or not, you need me to. You’ve helped me find patience, and still I pray for more every single night.

You have forced me into a vulnerability like I have never known, and shown me all the amazingness that follows such a leap.

You’ve shown us how hard your world can be. Through frustration, pain, confusion and sleep deprivation you are still so happy in your soul. You’ve shown me this is not only possible, it’s just all a part of this wildly imperfect, beautiful ride.

I am so thankful for you.

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A little about where we have been…

…and then it’s all about where we are going!

Living with autism did not begin for us the day we received Wilson’s autism diagnosis. He was the same boy the day before the diagnosis as he was the day after. For us, the journey to discovering this diagnosis began last summer when an educational specialist from the school district brought to our attention that she noticed red flags for autism in Wilson. At that time, Wilson was receiving Early Intervention from the school district for speech delay. Autism had kind of been on my radar, though I didn’t know very much about it. I was just a new mom, worried that her son wasn’t talking or socializing in the same way as other kids his age.

This news about autism red flags was crushing. It’s one thing to have a worried feeling in a very distant part of you, but a whole different thing when someone you barely know confirms that these worries are very real and valid. I knew next-to-nothing about autism besides that it scared the shit out of me. I immediately consulted Dr. Google and found that there was no cure.  For several weeks, I could not get past that. I felt like Wilson had been slapped with some kind of life sentence. And we had too.

We immediately began weekly speech therapy again (he had done it for a few months when he was two) and occupational therapy followed for motor planning issues. This is when my hatred for waiting lists began. The months that followed were filled with a “hurry up and wait” mentality. We were rushed to get Wilson the early intervention he so desperately needed and that his specialists recommended, but were plagued by waiting lists at every turn. Developmental Pediatrician, Psychologist, insurance, Educational Autism Evaluation, results, Psychological Autism Evaluation, results, Naturopathic Physician, blood and urine testing, results. There was always a long wait for something. It was torturous at times.

Here is what they don’t tell you about early intervention: the earlier you “intervene”, the harder it is to know what you are dealing with. For MONTHS we were back and forth on whether or not Wilson truly had autism. And so were the professionals in that field! Talk about a confusing, rollercoaster of emotions. We went through it all: denial, pessimism, optimism, sadness, hopeful, mad, exhaustion, scared.  So scared.

Eventually, with the diagnosis, came acceptance. Which felt somewhat like relief, given the confusing months we had all been through. We found a path, developed a treatment plan, and hit the ground running. We met with a Naturopathic Physician that specialized in autism. She helped us look at Wilson’s health as a whole and what types of deficiencies and ailments we could address to make him feel better physically.  We started him on the gluten-free/casein-free (GFCF) diet (more on that later). We also removed some of the added sugars and food coloring from his diet. 

Some of these changes weren’t going to be easy, given his extremely picky and limited eating habits. We started him on some vitamin supplements, fish oil, a probiotic, a botanical digestion supplement, and last but not least, Methyl B12 injections (lots more on this later). Slipping things into my child’s meals and sneaking into his room in the middle of the night to give him an injection in his sweet, perfect little bottom is definitely not where I saw this motherhood thing going.  I’m willing to try anything (within reason) to help my boy.

Wilson started Applied Behavioral Analysis (ABA) in July and it’s going great so far. ABA is the application of behavioral principles of learning and motivation to the improvement of socially significant behavior.  In short, his therapists study certain targeted behaviors and figure out the root of why these behaviors are occurring. Then they use these behavioral principles to increase or decrease certain behaviors as well as teach complex skills in areas such as communication, self-help, play skills, and self-regulation.  He is working hard, learning so much and the best part: he loves going there.  I’m looking forward to sharing more about his ABA experience in the coming months!

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What is autism? And how does it affect Wilson?

Autism Spectrum Disorder (ASD) is the name for a group of developmental disorders that affect communication, social development and sensory processing.  For Wilson, verbal communication is very limited and he can’t always “find” words to express himself and in turn can have difficulty regulating his emotions.

  • Often repeats phrases he learns from cartoons (scripting). In the realm of language, he has always excelled with numbers and songs, because they are the same every time; reliable and easier information for him to access.
  • He tends to scream when he is frustrated vs. using words to express his emotions or desires.
  • Repetitive use of words and sounds non-communicatively (self babbling).

It constantly amazes me the phrases Wilson will learn from his cartoons. Especially when his vocabulary was so limited (he has continually improved his vocabulary in the past few months). Sometimes he is able to generalize these learned words or phrases into correct situations in real life, and sometimes he sounds like he is in another world, reliving scenes from a favorite show, usually at a very random time. One of his favorite shows right now is Dora the Explorer, which includes lessons on Spanish language and culture. The other day he said “Hola! Soy Dora. And I’m boots!” It was adorable but made me think about how odd it was that he can say that in Spanish but not “Hi, my name is Wilson” in English. We’re working on it though!

Social development has been another challenging area for Wilson. One of the harder things for us to see is that he wants to play with others, he just doesn’t always know how to initiate or participate like other children his age.  Often times he can appear aloof or indifferent and it looks like he is ignoring people. Social interaction can be overwhelming for him because he doesn’t always interpret gestures and subtle facial expressions correctly (or at all). We’re learning that many subtle social cues and skills need to be actively taught to Wilson, whereas other children seem to pick them up naturally.

Since Wilson has difficulty regulating his emotions in frustrating or overwhelming situations, he may lose control and have inappropriate outbursts, crying/screaming tantrums and start hitting others or throwing things. In the same realm, Wilson can have difficulty and anxiety dealing with other people’s emotions.  Intense emotions can make him uncomfortable because he doesn’t understand them.

  • His eye contact is minimal. Even if he does communicate with a person, he doesn’t always look at them while doing so.
  • He shows more interest in objects/individual activities than engaging with other people.
  • He can appear aloof or indifferent to anyone depending on his day and mood.
  • Does not understand how his actions affect others.
  • He can get overwhelmed easily.

Repetitive behaviors and sensory processing issues were some of Wilson’s main ASD red flags. Repetitive behaviors can include (but not limited to) repetitive movements with objects, repeated body movements, ritualistic behavior, sensory sensitivities and intense preoccupations.  Also, echolalia, which is the repetition of a single word or phrase. For example, sometimes when I say “Bye, Wilson!” he’ll say “Bye, Wilson!” instead of “Bye, Mama!”

Adhering to plans and routine is another area of importance for Wilson. In comparison to some autistic children who often need absolute consistency in their environment (a slight change in any routine — mealtimes, school preparation, or going to school at a certain time and by the same route — can be extremely disturbing to them) Wilson usually shows some more flexibility in this area. He does, however, thrive on routine and knowing his plans in advance.

Wilson has had a few persistent, intense preoccupations over the past year or two. Some examples are elephants, keys, pirates and trains. He likes to collect them, point them out when he spots them and, unlike other toys, games, etc., his intense interest in them has remained constant over time. We literally have to hide our car keys from him, and he has one giant key from his grandma and grandpa’s house that he likes to sleep with at night (and of course his beloved stuffed Dumbo).  One theory is that children on the autism spectrum experience a lot of anxiety and a preoccupation can be calming because of its familiarity.

  • Stimming: spinning, hand biting/mouthing objects, head bumping
  • Scripting/echolalia
  • Repetitive/rote play
  • Rigidity- has a very hard time transitioning from a preferred activity to a non-preferred or unfamiliar activity.
  • Lining up/sorting toys; hoarding objects/toys
  • Intense interests/preoccupations

Dysfunction within the sensory processing systems can present itself in many different and opposing ways depending on the person. With Wilson, he has shown dysfunction with motor planning. This is the ability to plan and execute different motor tasks. This can affect him both with verbal communication as well as activities such as playing with new toys/games or getting dressed.  A variety of sensory processing difficulties arise for him throughout the day so his mood can be very unpredictable.

  • Displays sensory-seeking behaviors such as movement (running, spinning, bouncing); hyperactive
  • Seeks pressure (bumping into people or objects, calms with tight hugs, like to be wrapped up in tight blankets)
  • Avoids certain textures in food, clothing and touch
  • Motor planning- struggles attempting (planning and executing) new tasks so avoids them and prefers repetitive (known/safe) actions and play
  • Does NOT like hair combed or cut

It’s important to remember that people with autism are all unique individuals, just like you and I. Every person with autism is different, as are their behaviors and challenges. I never want Wilson to lose his individuality in this label.

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