A Lesson Learned

Approximately one year ago, we moved to a new home. It was only about 1 mile from our previous home, and the neighborhood was familiar. We were moving only a few blocks from our very close friends. Escrow closed in the first weeks of the new year. Little did we know how much we would learn from the timing of our move.

We visited the home often before we moved, explained as much as we could to both girls to prepare them for the transition. The first few days and weeks went smoothly. No troubles arose until Charlotte’s 3rd birthday at the end of February. As some of you may have experienced, the third birthday is very significant in the world of a special needs child. Under the age of three, the child can (somewhat easily) qualify for Early Start services. This is a state program where the child is evaluated and receives therapies or services, depending on their individual needs. Charlotte had qualified for a center-based program where she was working on controlling her sensory dysregulation impulses in a classroom setting.

She thrived in this environment and loved her school. Three mornings per week, her caring and supportive team of teachers gave both of us what we needed at this point…a community where we felt like we belonged, specific strategies to help with behavior issues at home, and a safe opportunity for Charlotte to practice her emerging, yet delayed, social skills.  Unfortunately, the center-based school and all Early Start services abruptly end on the child’s third birthday.

The next step for continued services is through the school district or medical insurance. We hit an immediate road block with both of these options. Charlotte’s strong language and motor skills kept her from qualifying for anything. We were encouraged to mainstream her. On a cold and dark March morning, I made calls to local preschools. With apprehension and a fear of being rejected, I explained our situation to the newly-opended preschool from the same elementary school that Dana attended. We were welcomed with open arms, yet we were fully aware that this was a mainstream situation and these teachers had completely different training and experience than where we had just come from. I alternated my teacher and parent hats, connecting with and educating the preschool staff, filling them with as much information as I could that was specific to Charlotte’s needs at that time–sensory regulation issues, social delays, repetitive language, and defiant behavior. Despite my best efforts and the wonderfully receptive teaching staff, it was a brutal change for Charlotte.

Looking back, I wonder how we could have been so blind to how these huge changes were going to affect her.  I think we’ve learned so much about her needs from this journey, that experiences like these have begun to guide our choices, our actions, and our parenting. We see it all so clearly now, but at the time she was the teacher and we were the students. She took us back to the beginning of her life to let us know how much she was affected–she stopped sleeping.

Just like in infancy, it was slow at first. Initially, just some trouble going down at bedtime. It would take a few trips into her bedroom to settle her down to sleep. As the nights progressed, there was more resistance going down, and eventually waking a few hours later. This could be as early as 10 or 11pm–just as we were winding down, she would appear wide-eyed in our doorway. At the worst point, she would be awake for several hours in our bed, absolutely refusing to go into her own room.

We have always been a big fan of sleep hygiene, so we were hesitant to start any habits that were going to be difficult to break later on. We knew that letting her learn to sleep in our bed was going to be a battle we would have to fight eventually, so we faced it head-on. We had done “sleep training” with both girls in the early days with success, but we were stuck with knowing that wasn’t going to work for Charlotte. We were confident that she would have cried all night, never allowing herself to go to sleep.

I tried everything I could think of–I stood outside of her door in the dark hallway for hours, trying to wean myself away from her so she could learn to sleep on her own. It was maddening to hear her fall asleep and then wake herself up screaming for me. One night I remember rocking her in the rocking chair for over an hour, only to have her awake and talking to me, instead of getting sleeping or even drowsy.

It was in the middle of one sleepless night that I remembered the sensory inputs that we had done early-on in her diagnosis. With her improved skills and sensory regulation, we hadn’t needed to do any bouncing, brushing, massage, or swinging. The next morning we made an appointment with the Occupational Therapist that we had worked with through Early Start. We paid the $125 for an hour-long session that would teach us to regulate and calm Charlotte’s nervous system to find sleep again.

We brought back all of our old tools and re-learned the importance of sensory input in Charlotte’s life. Without hesitation, we added in joint compressions, brushing therapy, jumping, and swinging to her daily routine. She began to seem like her old self in her new environment. We recognized that sensory regulation was not a ball we could afford to drop again, so we sought out private Occupational Therapy and began to pay for as much as we could afford. In the meantime, I filled a grievance with our insurance company for failure to cover her needs.

After a few weeks of rigorous sensory regulation inputs that made her feel comfortable in her new environments, Charlotte began sleeping better. We have learned so much about how to make her comfortable in her environment and how to help prepare her for sleep. We make sure she gets plenty of exercise in the form of therapy or play throughout the day. We start her bedtime routine early and give her a lot of time to get ready to go to sleep. Rocking, bouncing, massage, and other inputs became part of of her bedtime routine. We limit her naps and keep her bedtime consistent.

Currently she falls asleep easily and then wakes only once to come into our bed. Once there, she falls asleep quickly and sleeps soundly until morning. While it’s certainly not perfect, and we have tried everything from bribery to physically moving her to keep her in her own bed, we accept it as her progress and listen to what she continues to need–safety and security in the form of us.

Sensory inputs and twice weekly Occupational Therapy Sessions are firmly set in our schedule. We learned that this is absolutely crucial to her healthy sleep patterns. Also, with any change in routine or her environment, we prepare Charlotte with words and visuals. We travel less often, knowing how it stresses her system and affects her sleep. We let her be our guide for a busy weekend with friends or a mellow night at home with an early bedtime. We still look for the fine balance between challenging her system with new experiences and stressing her system to the point of dysregulation.

I heard Chris Kresser say on a recent podcast that more melatonin is produced in the gut than in the brain. I nodded in agreement and reflected on the lessons we have learned about sleep, change, regulation, and overall health in this past year. As we heal her gut with the Paleo diet, we will heal her brain and nervous system, and she will find more comfort in her environment with fewer sensory inputs.

In the meantime, we’ll celebrate Charlotte’s 4th birthday this month and all of the lessons we’ve learned together.

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2 thoughts on “A Lesson Learned

  1. Do you anticipate a time where Charlotte will be able to administer her own sensory therapies? the brushing, the bouncing, etc.? Of course some items require a “helper”, but i was wondering if it would be a double bonus if she feels like she is owning her own calming solutions?

    • That’s the goal! Getting her to self-regulate will ensure that she feels comfortable in her own skin throughout her life. Some days it feels like we are closer to that and other days it feels like we’ll never get there, but she’s come so far with her regulation, we’re confident she’ll own it in her own time.

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