I’d like to take you on a journey of what my husband and I have experienced being special needs parents. What I share here shows the love I have for my son and also the truth of my feelings. With special needs parenting, life can be rewarding and exhausting. Sensory overloaded meltdowns seem endless, support can be sporadic, yet the abundance of love, respect, and acceptance always comes back in tenfold! My opinions are my own, and they are genuine.
It has been two years since my youngest son was diagnosed with a type of autism that’s associated with a rare genetic disorder called 16p11.2 proximal micro duplication. According to Wikipedia, the definition of a “rare disease,” in reference to the prevalence of such disease, is “any disease or condition that affects fewer than 200,000 people… or about 1 in 1,500 people.”
What makes him so rare is that not all 16th chromosomal abnormalities develop into any other diagnoses (actually many of which are asymptomatic), but in some cases it does. He’s in the 1% where the duplication develops into associated autism – affecting his central nervous system, auditory system, visual system, as well as his sense of taste and smell.
Essentially, the disorder means that he has an extra band of DNA at the 16th chromosome pair. We all have one individual band at each side of our long and short arm of our chromosomes. In my son’s case, he has three – one on his left arm and two on his right.
All this extra genetic material can manifest into other disorders such as ADHD, ODD, OCD, learning disabilities, and mood and psychiatric disorders such as bipolar depression and schizophrenia. Auto immune disorders, spinal growths (known as chiarri malformations), seizures, and tumours are all medical possibilities for my son.
I just learned of my son’s diagnosis in 2015, and this led to the diagnosis of autism level 3, as stated in the DSM 5. The Diagnostic & Statistical Manual of Mental Health Disorders Volume 5 states that he requires substantial support for resistant and pervasive behaviours.
I will admit that when I heard his paediatrician give his diagnoses I cried… and I shook so hard that I fell off my chair! I completely lost control while the doctor said she was sorry over and over again. What was she sorry for? Her world didn’t change in an instant. I had to take time to share with my husband and our families while we were processing it ourselves.
In the meantime, I’ve delved into my “Mom research mode” and learned more of how to help my son. I’ve met with a geneticist for counselling, and she provided me with some additional information. She was impressed that I was aware of so much already. I didn’t have a choice as I was left on my own after my son’s paediatrician left her practice. Before she left, he was given the label “Sensory Processing Disorder,” which, according to Wikipedia, is “a condition that exists when multi-sensory integration is not adequately processed in order to provide appropriate responses to the demands of the environment.”
I’ve always referred to my son as my SPD Superhero as I already knew of this when he was “diagnosed” when he was two years old from another developmental paediatrician. I use the quotations around the word because “Sensory Processing Disorder” isn’t actually recognized as a medical diagnosis. There are organizations like STAR, and various books, such as Carole Kranowitcz’s The Out of Sync Child, and Dayna Abrahams’s Sensory Processing 101 that acknowledge its existence.
I think of my son as my superhero, and now he’s certainly my champion with all that he has had to endure since his birth! As I held him in my arms when he came into this world, I never knew what his life would hold for him. He was a tiny 6 lb, 2 oz bundle of joy with a fighting spirit. Now, he’s grown into a strong, independent, precocious, fun-loving, seven-year-old boy. He has had a lot to contend with in his young life.
Along with his autism and rare diagnoses, he also has other disorders. The first discovery after his speech, occupational, and physical therapy assessments was Global Developmental Delay, which stems from a delay in intellectual development. This means he has a severe deficit in two or more motor skills, and my son has three. The “Global Developmental Delay” label phases out after the age of five, as a child ages. My son also has a severe recessive speech deficit and moderate expressive language, as well as severe fine motor skills and moderate gross motor skills delays. Recessive language is the ability to have a conversation with the serve and return approach.
My son doesn’t have the ability to retain that information to establish verbal fluency. Although he was non-verbal as a toddler, he became semi verbal as a preschooler, by using the method of “scripting” when he was the age of three. He would watch the movie Frozen, and he would recite dialogue from the it. I have watched that movie with him at least two hundred times; it was a game changer for his speech delay!
He’s now verbal but needs instructions broken down for him in a way he can understand, as his processing speed is slower. This leads to him having executive functioning issues (organizing his thoughts and executing the actions required in an efficient manner). All this new information leads to yet another diagnosis of Intellectual Development Delay, which is what he was born with. Regression can play a large part in his frustration level so we have to practice a skill repetitively till it’s held in his memory.
Team No Sleep
Sleep issues have plagued my son since he was born. We later discovered he has obstructive sleep apnea (OSA) and asthma, which is controlled by medication. He completed a sleep study at the age of four years old. The discovery was that he has several central sleep apneas where his brain doesn’t communicate well with his heart and lungs to get enough oxygen intake. After medication was introduced, his tonsils shrank down to a typical size – much to my relief! This led me to enrol him in The Better Nights, Better Days sleep training therapy program at the age of six, specifically for children with neurodevelopmental disorders.
Time Management & Sequencing
For eg: First, Then, and After. This type of sequence helps him process things better with his executive functioning delay. He’s a sensory seeker of sensory input which is known as sensory modulation disorder. He can’t spin in a circle in one direction for too long as it over-stimulates his vestibular sense, which affects his balance and agility located in his inner ear canal. I have to make sure he spins clockwise and counter clockwise or he’s crashing into walls and people. In fact, when he was a toddler I used to have to duct tape a body pillow to the wall so he wouldn’t injure himself!
Body Awareness & Prescription Eyeglasses
His proprioception sense is weaker; this is his ability to be aware of his body in his personal environment. Playing the game head/shoulders/knees/and toes uses visual spatial concepts and cues to help him understand. He gets very visually overstimulated, so I use a white board or visuals to help keep him on task. He’s also wearing his glasses in school to help with that.
He has completed a one-year developmental therapy contract, which includes having a behavioural aide and psychologist working with us in our home. In addition, he also has an educational aide at school, a therapy team of a speech and language pathologist an occupational therapist, and a learning specialist. As well, he has had access to a community aide to help with the social and behavioural aspects associated with exposing him to outings like going to a movie theatre, eating out at a restaurant, and participating in a library program.
Visual Tools Using Pictures for Transitions
My son has difficulty with adapting to changes in his environment so we use a white board and marker both inside and outside of the home, using the “first, then, and after” sequence of events. Visual cues (tapping body parts), stating the name of each body part in motion and crossing the midline, and using visual pictures all help him to develop an image in his mind about what is happening and how to react to it. My son responds very well to all the above and to repetitive speech. With this, I’ve seen him struggle with leaving the house to happily going on an adventure.
Social Stories, Sentence Strips, and the Social Thinking Program - Incredible Flexible You
Every physician and specialist appointment, hospital check-up, visits to the blood lab, and ride to school is an adventure for him. The reason why is because I make it this way by using social stories, sentence strips, and role playing to help him motor plan and process the visual and auditory information. The social stories app “Social Stories Creator” is what I use to build his own story using pictures and verbal dialogue to prepare him for something new, such as going to the dentist.
Self-Regulation and Body Break techniques
With his sensitivity to noise, my son can become very sensory-overloaded in his environment. I work with him on using his breath to calm him down. The iPhone App “Sesame Street Breathe” is quite helpful.When he’s not able to articulate how he’s feeling past his emotion state, we use the “Zones of Regulation” method,which allows him to associate a colour with his emotion.
Blue - is equal to feeling sad or tired
Green - is equal to feeling happy
Yellow - is equal to feeling scared or nervous
Red - is equal to angry or upset
The alert system for regulation is also very effective to use as he gets older; it compares emotions to a car engine, using “how fast is your engine,” for Self-Regulation, which was developed by two internationally known occupational therapists, Mary Sue Williams and Sherry Shellenberger. Children can talk about their “engines” going up into high gear (hyperactive), into low gear (tired or run down), or in a “just right” gear (attentive and focused).
We also use body break visual cards and utilize deep pressure massage, skin brushing/joint compressions, and heavy work to help his central nervous system and brain benefit from the sensory input that he needs to feel emotionally, physically, and mentally regulated. An example of heavy work: filling my son’s backpack with some books as he walks around the house. Examples of animal and yoga poses include bear walk, crab walk, dolphin, dog, and cat stretches.
Deep Pressure Techniques
First, I have my son lie down on his stomach on a mat. Then I take the couch cushions and put one on his back, legs, and feet. I then gently press on the cushions, making him into a sandwich. I will also switch up the cushions and take an exercise ball and roll that up and down his body. This is really therapeutic after a long day and a busy therapy schedule; he will become so relaxed he’ll fall asleep.
We work diligently to not overwhelm or overload him sensory-wise. Our life isn’t easy by any stretch of the imagination, but it’s manageable, and we share love, laughter, learning, and joy.
From the first time he opened his eyes and looked at me, I knew it would be he and I against the world. Now with support, education, awareness, and acceptance, we’ve found our special needs village… and for that we’re grateful.