Piper was born three months early. She spent 65 days in the NICU. We live in an area that has a very large, world-class, NICU. That being said, for the first half of the time she was in the NICU she was in a room with approximately 15 other babies each of which had about 3 monitors on them that set off alarms on a regular basis. Having a fairly normal tolerance for noise and high anxiety I often had to leave her room just to have quiet. My husband J was fine with the noise but like most men was unable to bring himself to just be there when there was nothing he could do.
This is how Piper was introduced to the world. A world of bright lights and beeps and alarms.
For good or bad we had her moved to a smaller hospital nearby for the second half of her NICU stay. It was part of the same hospital system and she was treated by some of the same doctors. However this NICU was QUIET. Each baby had their own room. All she heard was her own monitors and alarms. She had regular visits from both parents now and sister too. I am not sure if this contrast had a positive or negative effect on her.
When she finally came home she was unable to coordinate the suck swallow breath mechanism and I immediately contacted Early Intervention. I have friends that are teachers, others that work for the county, and some that are parents of special needs children. I knew what she needed. She needed someone who knew more than I did to help her. She came home in March, she was evaluated in April (and had her first IEP written) Had her first OT in May and was able to suck swollow breath before her second OT session two weeks later. It was two months of her being home that I had to pull the bottle out of her mouth every 5 sucks so she could breath. For me the OT was a miracle worker.
Her first issue was definitely one related to sensory issues. She could not learn to coordinate suck swallow breath while so much else was going on. I had to lay her down in the boppy and turn off the TV and limit her sensations to just the bottle. She would not eat if there was too much going on around her. She would only snack if we were at my parents and them scream for a bottle as soon as we were in the car. She would shut down around strangers sometimes completely by just going to sleep.
Now a whole year later she is 17 1/2 months she has blossomed. She is a sensory seeker until she can’t take it anymore then she shuts down. We are doing the Wilbarger Brushing Protocol, which makes a marked difference in her ability to process. She loves to swing – fast. She loves the sand box. She climbs the stairs whenever she gets a chance. She climbs on and off furniture off and on on and off. She has started walking about two weeks ago and now the fun really begins.
I worry that as she gets older she will be unable to function in the day care environment that her sister has thrived in. I worry that she will be seen as a problem child because she must go go go. I really think the problem is that our society has too narrow of a view of what is acceptable. I do not like that she has a label SPD. But I embrace it because that is how she will get the services that she needs to cope with a school system that is not designed around sensational children like her.
(PS I have enjoyed learning about sensory diets and Dr. Greene I am glad I found this community.)