You may recall our friend Alex from the story Inclusion: A Parent’s Perspective.Today, as Alex prepares for her daughter to enter Kindergarten, she embarks on a new journey — one that is filled with love, uncertainty, and at times, heartache. Join Alex as she seeks answers and finds they aren’t so easy to come by.
My daughter is energetic. She feels everything at about 150% and laughs with all of her being. She is kind and naturally nurturing. She is the first to show compassion when one of her sisters or a friend is sad or hurt. She loves theater, playing dress-up, and singing. She is incredibly intelligent and beautiful.
And she struggles. My daughter has 45-minute tantrums when she is overwhelmed. She scratches herself. She hears strangers tell me, “You need to do something with her.”
As a baby, my daughter was slow to walk, but once she did, she didn’t stop moving. She spun constantly and fell out of her chair when simply sitting. She washed her hands with scalding hot water – on purpose. She didn’t complain of pain, so I never knew how bad an accident was until I saw blood. One time, she spun so long and so hard that she split her lip open, requiring stitches, and her head open, requiring staples. She still has scars from that.
My daughter is five now, and she still fidgets so much that she might fall out of her chair when simply sitting. She runs laps around the house before bed. She literally cannot sit for a TV show, let alone a puzzle activity at her Montessori school. She is scared of anything new or that she thinks will be hard, even if she did it all on her own the day before. In April, she screamed inconsolably for the first five sessions of her swim practice, even though she’d mastered the same skills the year before. When the teacher tried to get her to float, my daughter grabbed at her and even hit her once.
With the help of ice-cream and the patience of a great teacher, we are through the worst of it now. But what happens when my daughter enters kindergarten? How will her teachers respond? How will other children take it?
I started pursuing a diagnosis more than a year ago, but not because I thought anything was “wrong” with my daughter. I pursued a diagnosis because she struggles in ways other children do not. For years, I have known that she would need extra support in grade school, and here we are, with kindergarten rapidly approaching. I worry that under the pressure of this huge change, her most concerning behaviors will return and she will quickly fall behind.
As soon as my daughter turned four, my husband and I took our concerns to the pediatrician. The pre-school teachers gave us written observations to take along. Our daughter had been running out of the school and having loud, long, and intense tantrums. She was too young for most diagnoses and did not exhibit the criteria for others, but because the behaviors were so severe, the pediatrician identified them as sensory processing disorder (SPD). Since SPD is not recognized as a clinical diagnosis in the Diagnostic and Statistical Manual (DSM-V), we began the journey of advocating for a child who struggled, but did not qualify for any diagnostic related services.
Flash forward to this spring. Once again, I sat in the pediatrician’s office, seeking an explanation for my daughter’s needs. Even though she no longer displays the most dangerous behaviors, she still struggles, and she still needs individual support from her OT, teachers, and us. I worry that without a diagnosis, her future teachers won’t recognize just how much support she needs.
While discussing this with the pediatrician, we both felt that my daughter might have symptoms of ADHD. I asked for an evaluation – not so that my daughter could have medication, because we don’t want any, but so that she could access individualized educational services at school. The doctor handed me four copies of the NICHQ Vanderbilt Assessment Scale; two for my husband and me and two for her teachers. I immediately completed mine with the only thing I had – a pink pen – because I need brevity in intense situations like this.
As I filled out the form, I remembered a conversation my husband and I had about being honest. There is no doubt that we love our child, but this assessment is not a measure of our love. It’s our honest perspective of what she can and cannot do. I reminded myself that the answers I put on paper do not reflect how kind, funny, and compassionate she is. They simply reflect the truth of what she needs.
But even with this reminder, the questions felt raw. They brought back painful memories, like the first time I saw my daughter so overwhelmed that she hit herself. Or children who pulled away from her because of her intensity. Or the adults who brushed my concerns aside and told me that I am worried for nothing.
When the results came back, there was no relief for this pain and uncertainty. Two ratings indicated ADHD, but two did not. In the end, the pediatrician remained conservative and chose not to give a diagnosis. I was disappointed, scared, and left with so many questions. How do I prepare my daughter’s teachers for next year? Do I tell them about our struggles, or let them get to know her first? Do I trust that they are amazing, as I believe they are? Or do I ask for a meeting before school starts, risking the teachers meeting her with preconceived notions?
As the parent of a child who needs accommodations, but at the same time does not clearly fit into any defined category, I wonder how far to go in advocacy. I have a letter from the OT outlining what strategies my daughter needs in the classroom, and the preschool teacher will give me the same. For now, I’ve chosen what feels like the middle of the road. I’ll tell them that my daughter has SPD. I’ll tell them some of the things that are hard for her, like sitting still and writing. I’ll give them the information about what has worked. But I won’t go into detail about the stitches in the lip, and staples in the head, and 45 minute tantrums – yet. I want my daughter to be loved for who she is. And I want her to thrive.
This is an evolving journey, but what I feel so far is this: since there isn’t a clear pathway for advocacy, the best I can do is stay involved. I’ll get to know the teaching staff and paraprofessionals in my daughter’s class. I’ll strive to create supportive relationships so that if issues do arise, there will be a team of people ready to work together for whatever my daughter might need. And I will love her every single step of the way.