Our Neurodivergent Journey

By Beatrice Moise

Our Neurodivergent Journey is about having a tool to help parents journey through parenthood while having a child with neurodiversity. The book teaches parents what early intervention options exist and what they can do about attaining them. Our Neurodivergent journey is filled with personal stories of failures and success and how to overcome and understand these parenting issues. It is a guide for the neurodivergent community from the perspective of a professional and a mom.  

Our Neurodivergent Journey is an unfolding narrative from the onset of being diagnosed with Autism at three years old to what life is like with a limited verbal child as the years' progress. It's about how Autism can look and how it changes through the years. It captures the importance of teaching life skills early to help your child navigate. The book is designed to be uplifting and positive real-life stories and stresses the importance of consistency and routine for the Atypical brain.

• Language: English
• Publisher: Beatrice Moise
• Release date: Jul 7, 2022
• ISBN: 9798201467920

Book preview

Chapter

1

Autism

What is autism? Chances are, you have your definition of autism. I have always thought of autism as someone who decided to go down the buffet of issues and collect a few things. Meaning they may have added some sensory issues, communication issues, social difficulties. However, they also decided to go down the buffet of gifts and take some of those as well—the ability to be hyper-focused, math gifts, solving a puzzle. However, the actual definition is that autism spectrum disorder (ASD) characteristically presents itself in early childhood marked with struggles in areas of communication, sensory processing, and social interactions. ASD is a neurological disorder with multifaceted developmental issues attached, accompanied by repetitive behaviors and restricted interest. This is how I define autism.

Autism to me is wrapped up in my son, and it’s a label with no limitation based on what he was going to be and do. I have mourned the loss of how I thought a neurotypical son would be and behave. Jacob is filled with so much joy and mystery all at once. Autism is how my son makes his voice be heard without the utterance of words. Autism has an indescribable presence, and it can be loud or function in stealth mode. Autism is whimsical at times, and at others, deeply felt, debilitating empathy toward others. Autism is love, the selfless love you heard about but did not know existed until you had an autistic child.

Throughout my career, I have had the privilege to have known so many kids on the spectrum besides my own. I have noticed three characteristics of autism that seem to impact children with ASD no matter what level they are. These three areas are communication, sensory issues, and social skills. Some have more significant needs in one of these categories than others but still need support to help them navigate. I have also seen children that were looked at as if they would make a particular type of progress, yet they did not. My son initially did not fit the stereotypical definition of autism; I quickly learned that having a diagnosis was helpful, but it did not define him or what he was capable of.

Problems with Communication

Autism tends to affect children in various capacities, so it’s categorized as a pervasive developmental disorder. People with autism have difficulty communicating and are inclined to have a social (pragmatic) communication disorder. Children with autism have social communication issues; however, not all children with these problems have autism. My son has communication delays. During his early developmental stages, we noticed that he could follow instructions well but did not communicate his needs. He looked like a typical quiet kid. His receptive language skill was so high in the early years that it masked his expressive language weaknesses. Jake’s greatest strength is his ability to listen. I see so many similarities between Jake and me. He is an observer; he takes things in and processes them. I can see clearly how his excellent receptive skills masked some of his early autistic speech delays.

Sensory Processing Difficulties

Autistic individuals have difficulties with sensory processing issues, sometimes called sensory processing disorder or SPD. SPD affects the different senses in various capacities. People with autism spectrum disorder can have challenges of over-responsivity or under-responsivity with sounds, smells, and textures. Balance and taste can also be impacted. Jake’s SPD leads him to seek loud noises. We ended up with the child that loved fireworks. I attended a parent support group, and all the parents discussed how hard it was for them because their children were terrified of loud noises. Even something like the toilet flushing would cause their child to be in distress. This was not the case for Jake. I did not realize initially that he was continually seeking out noises; he was always humming, banging something, or seeking toys with sound. I discovered later why he had such a hard time sleeping at night: the silence was too much. He slept during the day with the vacuum, television, overall daytime noises. When we purchased a noise-making machine, it was a game-changer. It’s helped him settle not just at night, but anytime he is seeking auditory input.

Social Interaction Issues

Autism contributes to struggles with social interactions and engagement throughout the lifespan, not just in childhood. However, with proper early intervention, individuals can learn to manage their symptoms and appropriate coping techniques. Autism seems to limit the number of interests one may have. Jake was obsessed with lights and doors. He would spend the entire day turning on/off the lights throughout the house and opening/closing doors. I would schedule playdates, and the other children would engage in this behavior for a little while, then lose interest and move on to something else. Jake could be entertained all day like this, and his interest in social activities was limited.

Signs may include

• Difficulty understanding nonverbal cues

• Learning disabilities

• Limited interest/repetitive interest

• Speech delays or other communication issues, such as echolalia

• Inability to self-advocate

• Sensory-seeking behavior

• Lack of awareness

• Self-regulatory behavior such as stimming, hand flapping, or spinning

• Sleep issues

MY JOURNEY WITH DISCOVERING autism was different. My whole career was dealing with children that have some form of developmental delay, and more than 75 percent of my clients had autism. But Jake’s autism was different, and the reason it was different is that he was my son. I kept making excuses for his delays and development. I also was filling in the gap where deficits made an appearance. Looking back at it, I think it was the fear of knowing about all the things that can go wrong and how difficult life would be for him.

Speech/Communication Delays

When Jacob did not respond to his name, we thought he was having hearing difficulties. I must admit, however, that I never truly believed something was wrong with his hearing because his hearing issues only applied when we would ask him to do something. If he was watching television or listening to music, his hearing was fine; it seemed more selective than global. However, I never like to dismiss anything, and you truly never know. We decided to visit an audiologist to get his hearing tested.

If your child has difficulty understanding the concept of words or does not respond typically, it’s best first to get their hearing checked. They could require tubes or perhaps have something stuck in the ear canal. I had wondered if my son stuck something in his ear and I did not realize it. Some children experience speech and language delays if they have hearing loss. Most kids pass the screening test at birth; however, some may develop issues later in life. This is what I thought to myself—it’s been a while, who knows what could have occurred these past three years? So this was the very first thing we did. We had a friend with a child around Jake’s age who went to the audiologist; once he got tubes in his ears, he was fine, and within months his speech development was completely caught up. This almost seemed too good to be true. I wanted so badly for that to be our case. I wanted it to be our story, like other families I knew. But Jake had a perfect hearing test. In one instant, I was relieved and also