It has been a long time. I thought I was done with blogging years ago. I didn't have much to write about that hadn't already been written but today I write. Something has happened. My daughter got sick. Really sick. And we didn't know. It wasn't anything that was life threatening but it changed her, affected her quality of life, and turned our family upside down. After two years of turmoil we are on the road to healing and grateful for every single day that she doesn't have to struggle. I write in the hope that another child might be brought back from that terrible dark place that had begun to take our daughter away from herself, away from me, and away from our family. This is our story.
Not Just Sensory Processing Disorder
Always a sensitive little one we noticed our daughter had become even more sensitive somewhere between her 3rd and 4th birthdays. Her big emotions suddenly got bigger. The epic tantrums grew to fill the house. The clothing sensitivity became insurmountable. Every time things got intense enough for real concern everything would just as quickly return to normal. Each time, my husband and I breathed sighs of relief and agreed that she must have been working through a big developmental milestone like the ones that caused cranky moods and sleep regressions for a baby. These phases were tough to get through but all for good reason, we cautiously believed.
The trouble was that the phases kept coming in bigger and bigger waves, eventually bringing new symptoms, growing in duration and intensity. In the thick of it I remember thinking something was very wrong, this was not my child, things shouldn't be so hard for her. In our darkest moments, I feared she might not return to us.
The "Behavioral" Symptoms
Clothing sensitivity suddenly became debilitating when every morning before school was a traumatic event. Spending an average of forty-five minutes getting dressed, begging me to help her so she wouldn't miss the bus, my child cycled through tears of despair and angry outbursts that looked close to rage. Crouching on the headboard of her bed in a fit of despair, wanting to escape but nowhere to run, this child wanted so much to just get on the bus with her new friends and go to Kindergarten. At school these things didn't taunt her. She could play, learn and do what the other kids do, but getting there was torture. No one else saw what was happening inside our home but I watched.
I watched as my daughter dissolved in to primal emotional meltdowns every time she had to get dressed and it was heart wrenching. Feeling completely helpless after months of failed strategies it became too painful to watch but turning away is not a mother's option. So there I sat, morning after morning, on her bedroom floor, waiting for her to collapse in to my arms. Myself, sometimes cycling through tears of despair, frustration, and anger. All I could do was watch it happen over and over again. My own hell to be utterly useless to help my child.
It wasn't just mornings. One winter day standing at the window she bellowed sobs into the cold glass watching her sister and father playing in the first snow. Her snow pants and boots could not be tolerated for the discomfort they brought. One spring morning, a special ladies' day we planned with grandma began with this little one sitting on my lap, tears silently streaming down her face because her socks might ruin everything. Tears marked my cheeks too as I whispered over her shoulder to my mother, "It shouldn't be this hard for a child to put on her socks." I know; crying about socks doesn't sound so dramatic, but it wasn't about the socks. It was about her inability to accomplish routine daily tasks without feeling tortured. Every time we needed to get dressed, change, put shoes on, use the bathroom, go to sleep. Every step of our day was a horrible battle to overcome and the fight for normalcy takes it's toll. Do you know how many times a child comes in and out of the house on any given day? Every. single. time. was torture to put on shoes until all she wore were a pair of crocks. You choose your battles. I was as lost as my daughter. Exhausted, achingly sad, and worried.
Emotional reactions became far more extreme; overreacting to typical situations, unable to settle herself down, and refusing my help or comfort until she wore herself out. Shyness that became so severe she was hiding from people with whom she should have been perfectly comfortable like friends and visiting family members. Fear that started to look like a "fight or flight" response every time we entered a new situation took strong hold. Looking forward to a school event this child excitedly approached the building only to recoil as we hit the doorway, eyes darting around the room, grabbing my hand and pulling me back so she could hide behind my legs. Increased separation anxiety that moved her to cling to me in our own home, requiring me to accompany her to each room because she was afraid to go alone. She no longer went up to her room to play or went to the bathroom without me.
Suddenly new fears had her screaming that we not leave her at bedtime; gone was the happy, secure preschooler who used to blow us a kiss and snuggle in to the covers as we closed her door for the night. Debilitating insomnia that meant we were up multiple times a night, sitting with her until she fell asleep only to be awoken 40 minutes later. Eventually she stopped being able to fall back to sleep at all and would lie in bed until 5:00AM when she would either get up for school or finally catch a cat-nap. UTI infection symptoms including urgency, frequency, a few accidents here and there, and excessive wiping because she felt wet, crying that she needed to change clothes no matter how much I tried to show her everything was dry. UTI tests were all negative.
The Occupational Therapist explained that my daughter's behaviors were caused by sensory processing disorder. Her senses were wired differently but with occupational therapy and at-home exercises we could teach her how to operate more effectively in the world. I struggled to believe but I remained open to the idea that my child's sensory system had always processed things differently. A nagging question though; why had her processing not been this bad from day one? Why the sudden change? She was always a little sensitive but NOW. This was different. The therapist told me things had simply worsened with her age and that many kids with SPD are like this. I continued to read everything I could. I continued to implement "sensory diets" at home. I hoped my gut was wrong and that we could help her adjust to these new challenges.
The Occupational Therapist explained that my daughter's behaviors were caused by sensory processing disorder. Her senses were wired differently but with occupational therapy and at-home exercises we could teach her how to operate more effectively in the world. I struggled to believe but I remained open to the idea that my child's sensory system had always processed things differently. A nagging question though; why had her processing not been this bad from day one? Why the sudden change? She was always a little sensitive but NOW. This was different. The therapist told me things had simply worsened with her age and that many kids with SPD are like this. I continued to read everything I could. I continued to implement "sensory diets" at home. I hoped my gut was wrong and that we could help her adjust to these new challenges.
The symptoms seemed to have no correlation with anything we did or didn't do. I was baffled. "Fake it 'til you make it" is a necessary strategy at times so I just kept doing my best. By day we exercised, made charts, reward systems, scheduled down-time, and devised play around maximizing sensory stimulation to balance out her system. But at night, when the kids were asleep and the house was quiet I sat here by the glow of my laptop, reading, searching, watching videos, and talking to other parents. There HAD to be an answer. There are no new problems in this world, only solutions to be uncovered. I could not accept that this is all there was to do. As they say, "a concerned parent does more research than the FBI" and I fit the bill.
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