Thursday, November 25, 2010

John - (my story)

John was not a calm and peaceful baby. His limbs were always in motion. Even as a newborn, he would arch his back and slip off his car seat if I didn’t strap him into it quickly enough. A nurse noticed this at a breastfeeding clinic and suggested I talk to the doctor. My doctor told me it was nothing to worry about.

John lost a great percentage of his body weight after he was born. He became too week to stay up for his feedings. Nursing and bottle-feeding tired him, so his dad and I fed him formula with eyedroppers, syringe, cups, spoons, anything. Eventually, we managed to increase John’s weight and energy so he could stay awake while feeding with a bottle; however, I would have to press on the bottle’s nipple to help him maintain the flow of milk. I tried to continue nursing, but John would yell and arch his back and try to get away from me. He did not want to be held close.

But John was an easy baby and required little attention in his first year. He liked to be alone in his crib or in his swing. He did not want to be held. Yes, it was less work, but depressing for me. I felt I was not connecting and establishing a proper bond with him. I tried to hold him as much as he would let me and began to cherish late nights so I could hold him while he was asleep. I would always hold him and sing to him while he was asleep in the middle of the night.

John turned one year. He was still not crawling and not pushing himself up to a standing position. He was content to sit and play with his toys, sometimes staring at one small object with fascination for hours. I had a box of food magazines that I sorted through and ripped pages to collect recipes, he loved watching me do this. He was not curious about exploring his environment and never looked into drawers or cupboards. He would bum scoot (shuffle on the floor) to move around. He did smile a lot and had good eye contact and babbled quite a bit. John was a happy baby and full of smiles, but because he was not crawling and walking and he had not developed the pincher grasp and would still gag on solids (ate no finger food), the doctor referred us to a pediatrician who referred us to infant development, who eventually referred us somewhere else. No one helped. No one knew what was wrong.

When John was about 18 months he had his first temper tantrum (I think). I had no idea what was happening as he threw himself on the floor yelling and screaming, arching his back and rolling his eyes. I called an ambulance thinking he may be having a seizure. When they arrived, John was fine. They did not think he had a seizure and suggested it may have been a temper tantrum. I had no idea what he would have been upset about. We had been having a good morning before his “attack”. I took him to emergency (at Lions Gate Hospital) anyway and the doctor on staff suggested it might have been an atypical seizure. I was still not sure…. but the temper tantrums (?) increased until he had at least one a day…. and then more. It was very exhausting.

John’s smile began to change. He would be frightened by any sound including the vacuum cleaner or the heaters clicking on. He also developed separation anxiety and needed to be held all the time. I called him my monkey as he constantly clung to me and would grab my legs as I walked… at home as well as in public. He also hated being washed, having his hair brushed and washed and nails clipped. He started getting fussy with clothing and I now just dress him in joggers and t-shirts. He still needs a lot of help getting dressed. He was (and still is) a very picky eater and he started losing his hair close to his 3rd birthday. The doctor said it was very bad dandruff. I wondered about his diet and whether or not he was malnourished, he was always so tired and never played at playgrounds or did any of the activities other children his age enjoyed. I paid extra attention to his diet and added extra supplements in everything.

He was finally seen by infant development on the north shore (when he was about 18 months of age) for his delay in gross motor skills. They suggested ways to help John off his feet and walking. He started walking at 19 months. Then we put him on a wait-list for speech therapy as his speech and language development was delayed.

John became vocal (i.e other people could understand him) at 3 years old. Before then, he had a list of sounds that he used to communicate and I wrote the sounds down so everyone involved in his care could understand him.

At 2 ½ years old, his sister was born. He was very warm and gentle with her, but his tantrums continued and he had trouble sleeping. His sister became mobile very early on and John joined her on the floor. She is a blessing as she has introduced him to so many things and so many different ways of moving; including climbing on furniture. Although he attended daycare part-time he did not imitate other children until after his 4rth birthday. His caregiver thought his behaviour was not age appropriate and we had supported child development come in and watch him. She helped manage him at daycare, but also suggested we have the pediatrician contact Sunny Hill Hospital in Vancouver for an assessment.

After his 4th birthday, John’s anxiety became so bad we could barely leave the house. I was tired and burnt out. I pulled John out of daycare and hired a full-time nanny. I finally found a pediatrician that was eager to help us. These were our concerns: His anxiety, afraid of being alone, afraid of sleeping alone, crying in the night upon waking, afraid of the dark, loud noises, bright lights, dogs (especially their barking), would not go for a walk in the neighbourhood. But he loved malls and would always bolt, so I stopped taking him to the mall or public places, he’s afraid of heights, does not ride a bike, and his tantrums became violent; he hits and throws things and says he wants to kill me. He doesn’t understand the danger of running into the street. His fine motor skills are delayed, as are his gross motor skills. He smiles less and rarely laughs.

Our new doctor suggested he may have developmental coordination disorder and we found an occupational therapist that diagnosed him with sensory processing disorder. The diagnoses of SPD opened a lot of doors and I finally began to understand my son.

John is now 7 years old. I believe that if we had known about sensory processing disorder when he was an infant, my little boy could have spent the first years of his life happy and would have been able to catch up to his peers a lot sooner. He is still struggling, but attending Occupational therapy once a week is helping him with his fine and gross motor skills as well as his sensory processing issues. He is learning many new things and feels more confident about himself. John is smiling a lot.

Sensory Processing Disorder (SPD)

Sensory processing disorder (SPD) is a neurodevelopmental disorder that affects at least one in twenty children. Children with SPD don't process or experience sensory information the way other typical children do; therfore, they don't behave the way other children do. They struggle to perform tasks that come easier for other children. Consequently they suffer a loss of quality in their social, personal, emotional and academic life.

The Sensory Processing Disorder Foundation is dedicated to continue their research into the knowledge and treatment of SPD, so that, as Lucy Jane Miller writes in her book "Sensations Kids", "the millions of sensational children currently "muddling through" daily life will enjoy the same hope and help that research and recognition already have bestowed on coutless other conditions that once baffled science and disrupted lives."