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.

Wilson and dad

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.

Wilson LOVE

 

Finding Mama

Occupational Therapy (OT) is “the use of assessment and intervention to develop, recover, or maintain the meaningful activities, or occupations, of individuals, groups, or communities.” The American Occupational Therapy Association defines an occupational therapist as someone who “helps people across the lifespan participate in the things they want and need to do through the therapeutic use of everyday activities (occupations).”

Wilson began going to OT over a year ago to help develop skills and language he was lacking due to deficits with motor planning. Motor planning is “the ability to conceive, plan, and carry out a skilled, non-habitual motor act in the correct sequence from beginning to end.”  Difficulties with motor planning are caused by poor neural connections in the brain and problems processing sensory information in the world around us.

Motor planning applies not only to physical motor skills, but also to our ability to form words. Typically, people intake and understand information, plan a response (physical and/or verbal), and carry out their plan. This is true from complex actions down to very simple movements or words. These movements and responses occur through neural pathways to and from the brain to the part of the body that needs action/movement (leg to kick a ball, mouth to produce speech) and become almost automatic over time to make room for learning new things and building new pathways/connections. For Wilson, these kinds of connections in his brain are weak or disorganized, so he spends so much more energy on understanding and planning motor tasks than typical children. 

It is interesting that a perfectly functioning ear does not equate with a perfectly functioning auditory system. Our senses are only useful when the connections between the organ and the brain are operating correctly.

This is where OT comes in! We work on a variety of fine and gross motor skills as well as working on Wilson’s transitions from one activity to another, flexibility in play, and social skills. Our Occupational Therapist has helped us create visual schedules (example pictured below) to help Wilson know what is ahead in his day. She has also helped us troubleshoot with managing tantrums, potty training, hair cutting and expanding Wilson’s limited diet.

visual schedule

At Wilson’s sessions, his therapist combines activities that involve movement to develop core strength, balance and coordination with cognitive tasks. For example, one of his FAVORITE things to do there (or anywhere!) is swing. He loves being in motion. In swing photos at the top of this blog, you see the orange therapy swing and Wilson’s very own blue spacial swing at home. The swing provides vestibular input, increasing body awareness. The pressure provides a cocoon-like environment that has a calming effect. After moving or resting in the Lycra swing, children can feel more alert, relaxed and energized.

So he will sit on a swing and, while in motion, the therapist will hold up various objects or flashcards and Wilson will label them. This started very simple last year with things like labeling colors, shapes and animals, and has now has progressed to him forming 1-4 word phrases and sentences, and answering “yes/no” or “where” questions.

Movement helps activate the auditory processing area of the brain. Movements also stimulate neural connections. It is interesting that a perfectly functioning ear does not equate with a perfectly functioning auditory system. Our senses are only useful when the connections between the organ and the brain are operating correctly.

It has been so fascinating to watch Wilson build his vocabulary through these exercises. The words he was learning were ones he had been exposed to numerous times prior; while we read him books, watching cartoons, or hearing us or his peers talking. It wasn’t until he was in motion (a bit of a distraction which takes an element of pressure off combined with endorphins) that he was able to more easily access this vocabulary and attempt to say the words.

It was such an exciting time to start hearing his little voice more often. He still struggled with “finding” many words he knew and would grow very frustrated at times, but he worked SO hard and you could see (and hear!) the progress he was making.

But he still could not say “mama”. We worked hard on it at OT, I know our therapist realized it would mean so much to me.  We worked on it in various sensory environments, like while he was swinging, jumping on the trampoline, or tucked into a comfy Lycra tunnel (his other favorite!)

One afternoon in December, I was early to pick up Wilson from preschool. Usually he was anxiously waiting at the gate with some of the other kids but he was busy playing and didn’t see me.  So I climbed over to go get him and he turned around and was so surprised to see me, he said “mama!”  I really cannot describe how that felt to finally hear him say that word.  He was almost three and a half.  It’s one thing to BE a mom and even FEEL like a mom, but a whole other world to hear the one who made you a mom, call you “mama”.

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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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