If you have read my ABOUT page, then you may already know that my daughter Claire (now 5 years old), was always a sensitive child. From the day she was born, I recognized in her some of the sensitivities that I also suffered as a child. But by 2 years old, her sensitivities began inhibiting her development, and I began looking for answers…
Because Claire was “developing normally” according to her doctors, we could not get any help those the medical plan and eventually had to do my own research and pay of pocket for specialists. By the time Claire was 3.5, we found a wonderful Occupational Therapist (OT) who provided us with an assessment and a place to start. She was diagnosed with Sensory Processing Disorder (SPD), specifically oversensitivity and defensive behavior. (I’ll describe her symptoms in more detail below.) Since then we have changed medical groups and have found a wonderful pediatric allergist who is well informed in neurological and “autism spectrum” disorders and natural treatments. We also still see the occupational therapist on an as needed basis. If feels very good to have specialists who do not look at you like you are crazy and actually provide help and support.
So what made Claire so different?
Claire’s Symptoms as an Infant
I always say Claire was the easiest baby. And it was true, she slept well and cried very little. But even as an infant Claire was very sensitive and easily stimulated. She gagged easily and threw up regularly. Her bowls fluctuated between diarhea and constipation, and painful gas was a daily problem. Her skin was extremely sensitive to fragrance and other irritations and excema was common on her face. She constantly had diaper rash or vaginal irritations, especially if anyone but myself changed her diaper. She did not like being held. This was probably the hardest thing for me. When you have a new baby, you just want to cuddle them all the time. But she would push away and get extremely irritable if held too long. Since the day we brought her home, she had to face out when held. She could not fall asleep if she was being touched (rocked, held, etc.). She also had several ear infections and a broncial infection between the ages of 1-2 (this was also when she drank the most milk). But she hit all her developmental milestones, even if she was (and is) small for her age.
Claire’s Symptoms as a Toddler/Preschooler
Social and Behavioral Issues
We really began to notice the social and behavioral issues develop about the age of two. There were a lot of changes in her life at the time (new day care, I was pregnant, toilet training, big girl bed, etc) which made it hard to distinguish the underlying causes. Overall Claire was extremely shy even with family and close friends, to the degree of being anti-social. There were very few people she would talk to and even fewer that she would let touch her. She had no desire to make friends and “play dates” were not welcome. Especially in her house. She viewed it as an invasion, not a visit.
Sensory Defensiveness
As I have stated earlier after some research, getting no where with her doctors, a neurologist that said she was a 3 year old with ADHD and only talked about Retalin (don’t get me started), we went to an occupational therapist for an independent evaluation. There were several areas in which it seemed Claire was “definitely different” than the average child her age (Visual Motor Integration, Auditory Filtering, Proprioceptive Sensitivity). But it seemed the primary diagnosis was Sensory Defensiveness. “Sensory defensiveness is when a person responds noxiously to non-noxious stimuli.” Claire’s defensive responses were to loud, unexpected noises (auditory sensitivity), light touch from people but not inanimate objects (tactile sensitivity), imposed movement (vestibular sensitivity), and food (oral defensiveness, discussed on next page). All of these things would stress her out. She would get aggressive, irritable, and anxious. When she was really stressed out she would take long naps and sometimes loose bladder control. Something like potty training was really hard because she was constantly scared the toilet would flush (auditory); she felt insecure on the toilet seat (tactile and vestibular); and when she was stressed out she seemed to be so preoccupied that she did not feel when she had to go.
Auditory Sensitivity or Dysfunction
She was extremely sensitive to noises. If a there was a buzzer sounding, a knock at the door, a toilet flushing, the phone ringing, or heaven forbid that someone rang the doorbell, she would scream, duck and cover under the dinning room table or her bed. If we were playing in the backyard and a large truck or a fire truck when by on the street in the front, she would scream and run into the house. Also, if she heard the train whistle (more than 2 miles away), she would do the same. As you can imagine, it was hard going out into public where you can not control all the toilets, music, screaming children, motors, etc. She could not concentrate on anything but the fear of the noises around her. In addition, she spoke louder than the average person and often seemed like she was yelling. I read than this is common in children with auditory disfunction because they feel like the world is shouting at them, they shout back.
Tactile Sensitivity or Dysfunction
She did not ware clothing when at home (no matter how cold) and struggled with it when we were out. She could not fall asleep with pajama’s or blankets on her (even in the middle of winter) and I would have to sneak in and cover her after she was asleep. Bath time and any grooming was a nightmare. She screamed and cried the whole time. She avoided all contact, especially with other children, she would play in the corner and swipe at anyone that came near. If someone other than my husband or myself touched her without permission, she would struggle, wiggle away, and if that did not work, she would scream!!! And when we touched her, it had to be firm or she would react defensively. The doctors office was a real experience and often took two of us. One time that is so vividly burned in my memory, is when I suspected she had a vaginal infection. When the doctor tried to examine her it took two nurses and myself to hold her down (all of 25 lbs that she weighed). The doctor looked at me and said “This is NOT normal.” I said I know, that is what I am trying to tell you. Sunday school or pre-school was not an option, she would get very stressed out. And she was beginning to have troubles at day care. Finally between 2.5 and 3 years of age she became aggressive in protecting her personal space and started hitting other children at childcare. The strange thing is that when she hit, it seemed involuntary. Like a reaction, not a thought. She knew she shouldn’t hit, but seemed unable to control it most of the time. And as Ross (our son) began to crawl, she started to get aggressive with him too. She began “preemptive strikes” against anyone she anticipated coming near her. She was constantly distracted watching those around her to make sure that they did not come near. When we went out in public she was in her stroller (a safe place) or in my arms because I promised not to let others touch her. You would be amazed how many people try to affectionally touch small children. As a result, I quit my full time job, so the kids could be at home and really began my research into what was causing Claire’s problems.
Vestibular Sensitivity or Dysfunction
All of a sudden after turning 2, she was terrified of the swings, the slide, elevators, escalators, and rides in any car but ours. She would kick when lifted off the ground and suddenly was afraid of heights. And she had low muscle tone. She tired easily and was floppy. But she constantly craved movement in environments that she perceived as safe, such as her father’s arms. She constantly wanted him to hang her upside down or swing her. But if he unexpectedly picked her up, she would be terrified. She also had a hard time judging her place in the world and often used walls, tables, chairs, etc. as guidelines when walking through the house. She almost always was touching something when walking. When she was running and concentrating on her movement, she did not need the guidance of other objects and actually has very good balance. She could not ride a tricycle until almost 4 years old. She had good fine motor skills, but her gross motor skills were way behind.
I know this is a lot of information, but these are the most obvious symptoms that Claire exhibited that led us on our journey through neurological development, immunology, and nutrition. Bottom line my advice to all mothers is to listen to your instincts as a mother or parent. You know your child better than anyone. If their difficult behavior does not seem conscious or willfull, then begin to pay attention and right down their symptoms. Observation is the best diagnosis and no one has more time than you to observe them. After a while, you may see a pattern or something you can bring to the attention of the doctor. If you do not understand the answers you are getting from the doctors, be persistent. There are some wonderful, caring doctors and therapists out there who would love to help. And finally share with others, you would be amazed at how many parents are going through the same things! I encourage you to share here, make a comment or tell us about your child, every little bit helps!
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