[Continued] Sensory Processing Disorder: A Personal Journey, Silvia and her Son

[Continued] Sensory Processing Disorder: A Personal Journey, Silvia and her Son

…The other day Silvia called me because she felt, “I would understand, and she didn’t know quite what to do…”  Her son’s teacher was brushing over the needs of Phoenix.  Though Silvia had laid the ground work, met with administrators, and the teacher prior to Phoenix entering school, it was clear the path still needed to be built for optimum understanding and attention to his needs.  Silvia shared with his teacher, Ms. Michelle, that he didn’t want to come to school, that his anxiety was very high, that he is unable to express his discomfort, that yelling caused an SPD response that left him feeling isolated, silenced, and at times frozen (I wonder how many students experience these very same feelings?).  Ms. Michelle went on the defensive, explaining that she sees a happy boy during the day, that there were absolutely no issues (that she noticed)…  This caused distress for Silvia.  As a mother, knowing her son, walking the journey from birth, to diagnosis, to interventions, her own learning, trials, and success as a mom of a child with SPD (Sensory Processing Disorder), she knew more had to be done for her son in his class and needed more from the teacher.  Here are three things Silvia did as an advocate for her son:

Silvia called a trusted friend (who happened to be me):

This is critical, to have a person to truly lean on and get it out, without judgment (explain to your trusted friend you need to let it all out before any advice or let her know you don’t want any advice at all).  We spent a long time on the phone, she shared her perspective, anger, dismay, hurt, details of what was happening, that she wanted to take him out of school, that she didn’t know what to do, what would I do, how is it for a teacher who has twenty plus students in her care, what to do now, how to have Phoenix feel comfortable at school…Silvia dumped it all, that in itself was a relief, to be heard.

 

Silvia contacted a trusted person in the life of Phoenix:

Phoenix has worked with his Occupational Therapist, Edi, for a couple of years now.  She knows SPD and Phoenix, very well.  Edi has provided strategies and options in the past, a great resource on this journey of stops and starts. She is an integral player in advising Silvia on ways to inform the people in Phoenix’s life about supporting him.  She told Silvia, that Phoenix would not be able to verbally express that he needs help, or that he is anxious, or feeling uncomfortable. Edi told Silvia to let the teacher know that Phoenix won’t be able to verbally communicate his needs.  To tell the teacher she could empower Phoenix by suggesting ways to soothe himself; by compressing his arm, or getting a drink of water because it will disrupt the parasympathetic system which will lower his anxiety, the system is forced to focus on a biological action such as swallowing water, this breaks the pattern of anxiety, stress, and overload.

Silvia aligned herself with her son’s teacher:

Silvia approached the teacher again.  Letting her know those few things Edi suggested to help Phoenix.  She empowered Ms. Michelle with valuable information that resulted in a win-win for everyone.  In a short turn, around, Ms. Michelle let Silvia know she had lost sight of the children being her focus.  Allowing Silvia to recognize Ms.Michelle as a human being with room for learning, just like her students.

I consider an element of my friendship with Silvia to be part of my on-going professional development.  It is through conversation, compassion, and a willingness to learn and accept my own limitations of what I know and don’t know, then to add and apply to my knowledge base which propels me further in my profession.

Sensory Processing Disorder: A Personal Journey, Silvia and her Son

Sensory Processing Disorder: A Personal Journey, Silvia and her Son

Sensory Integration Disorder or Sensory Processing Disorder

A dearly beloved friend, Silvia, has a son, Phoenix, with Sensory Processing Disorder.

A serendipitous meeting, at a Parent Teacher group, is where I met Silvia, I remember walking by her to get to my seat, and knew I liked her immediately.

It wasn’t until weeks later, on a sunny morning out for breakfast, another serendipitous encounter; there Silvia sat.  We saw no one else but each other, chuckled that we met again, then exchanged phone numbers, and began spending time together with our sons; a new world was unfolding…

I am now on the other side of education, I am a parent, a mother with a huge gaping hole of vulnerability, worry, love, concern, protection, fear, and endless thoughts of what is the next best move… and a die hard, lifelong, passionate, fired-up educator…

Silvia and I shared our stories of parenting.  The challenges of seeing a scenario when our child hurts, what to do, when our child is uncomfortable, how to handle our OWN emotions and take care of our young one, and not slay other children or parents in the process!

Silvia, over time, began sharing more intimate details of Phoenix, who has Sensory Processing Disorder (SPD). I knew of some discomforts her son had experienced in class, with other students who had punched him. Most of the teachers knew nothing of interventions or supports for Phoenix. He was feeling alone, anxious, misunderstood, he struggled to eat food at snack and lunch; the recognition of and action for, his condition was misinterpreted and lacked a depth of knowledge for individualized guidance.  I as well lacked a depth of understanding.

One day, after preschool, all four of us (Silvia, Phoenix, my son, and I) met. Many children surrounded a Lego table, a mounting of small exchanges, seen as “normal” child-like behaviors, such as perpetual moving, weaving around, and brushing by one another, some bumping, some “no, don’t touch,” “that’s mine,” and “hey,” uninhibited actions of young ones at play, had presented a tipping point for Phoenix.  He fell into screams and tears, and I immediately thought, “Is Phoenix alright? Did my son done something to cause this?”  Silvia went to her knees right next to her little one and she waited patiently as he let it out. All of it.  It was intense and loud. I had recently learned about the art of “being” with your child, rather than attempting to make it better or soothe or shoo the incident away, I was now witnessing how that looked.  Again, I found myself in a state of not seeing anyone else, but my friend and her son, who was in need of tremendous patience.

Silvia and I remained in contact despite feelings that came up for each of us on that day.  She asked me openly one afternoon about the experience and I explained that I was uncomfortable with what had happened, and wasn’t sure how to proceed with the boys spending time together, that I was impressed by her patience and care of her son.  Silvia replied that for her it was a normal occurrence, it was her world that Phoenix needed her to connect and work out the complex feelings and responses that SPD presents.  It was a refreshing conversation of honesty, how often does that really take place when it comes to our children, where respect and communication cohabitate, and the friendship moves forward.  I could have and may have hurt Silvia’s heart that day, because, though I have been a teacher for years, and find endless compassion in my work for students I didn’t fully get it. I was now a mother and a teacher, navigating new friendships with my peers, who happen to be mothers of my son’s friends, this was brand-new for me.  I was now straddling the line of educator and mother

[to be continued]

 

 

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