What Helped My Daughter With Down Syndrome Navigate Challenges at Preschool
During her bath, my 5-year old daughter said to me, “Mommy, I have a good idea.” “What’s that, Hazel?” I asked her. Taking her bath blocks, she stacked one up on the edge of the tub. “This is a hill.” Then she took two more blocks and stacked them next to the first. “And this is a mountain.” We talked for a minute about hills and mountains, then she moved on to play with another toy.
My husband and I hear “I have a good idea” from Hazel frequently these days. Whether it’s an idea for a tea party, acting out a Daniel Tiger or Fancy Nancy episode, or simply suggesting a “good idea” of cookies for dessert or extra TV time, Hazel is an ideas queen. She’s also a savvy negotiator, with a “I was just asking” response said in a slightly exasperated tone when her dad or I say no to a “good idea,” often for a very good reason.
My daughter Hazel, who has Down syndrome, is a force. She is a sweet, smart, strong-willed, stubborn, and sassy little girl. In previous essays , I have written about Hazel’s diagnosis, how Down syndrome is simply a part of our family’s day-to-day life, and as parents to only Hazel, we only know how to raise our child in one way—with unconditional love.
All that I’ve written before remains true and I wouldn’t change a word. My life is better with Hazel in it, and I love my little girl to the moon and back. But it would be disingenuous if I didn’t share that last year was hard. Hazel’s behavior became more challenging. She began eloping regularly at preschool and home. Transitions became meltdowns and tantrums. School became less of a comfort—for Hazel and for me—as we navigated these challenges. More IEP meetings, strained conversations with the school director, and little to no feedback from her teacher about Hazel’s days at school led to my increased anxiety and frustration. As Hazel’s mom, I struggled to understand my sweet little girl’s behaviors and how a school year that began with such optimism had become so bleak. I got frustrated, yelled more often that I should have, and sometimes broke down in tears.
Despite all of this, my husband and I pushed on. We worked with Hazel’s behavior support team to put strategies in place to manage the elopement and transitions, and we shifted our responses at home to better support Hazel. While we saw changes at home, school remained a challenge. One early morning in February, a text from the school telling me about yet another one of Hazel’s elopements, was the final straw for me, and after a tear-filled phone call with my husband, I drafted an email to the school director that
voiced my anger, frustration, and genuine sadness about Hazel’s classroom situation, in which I stated:
During our parent-teacher meeting in December, it was clear that the teacher does not know Hazel. She did not know that she favors her left hand to write, draw, etc. She continually praised Hazel’s therapy team and how good they are. But she gave us no information about Hazel’s progress — social, emotional, academic. She clearly spends very little time with Hazel and knows much less about her than one would expect after four months of being her teacher. She rarely welcomes Hazel at the door in the morning when her dad drops her off, and I get little to no feedback when I pick her up.
All of this breaks our hearts. Inclusion is not about allowing a child with a disability to sit in a class with neurotypical children. It is about engaging that child in the activities and the lessons of the classroom, accepting that they may need some additional support or time to complete an activity, and ensuring that someone is there to offer that support.
What had been my final straw became the turning point for my daughter and her school year. An honest conversation with the school director (who has advocated for Hazel and has been a wonderful support for Hazel and for us the last three years), better communication with her classroom teacher, and
working together to manage the temporary—then permanent—absence of a PCA resulted in a happier Hazel who was more engaged in class and with her peers and more eager to go to school each day.
In early June, Hazel graduated from preschool. And I could not have been prouder of my strong, sassy little girl.
Over the summer Hazel’s preschool transitioned into summer camp. Collaborating with the school and our intermediate unit, we secured a part-time PCA for Hazel so she could safely attend camp. She eagerly looked forward to her camp days, to seeing her friends and running through the sprinkler during water play. We finalized Hazel’s IEP with our school district to begin Kindergarten this fall. I enjoyed our summer Fridays—me off from work and Hazel off from camp—planning playdates, exploring museums, swimming at the pool, and playing in the backyard.
Life over the summer had more calm and less stress. Hazel still eloped, she still had tantrum, and she continued to challenge me every day. But I what have learned and try to practice each day is this: live one day at a time, breathe deeply, and know that even on the hardest of days, there is light at the end of the darkest of tunnels.
My Hazel is a force, and for that I am so thankful. And each night when I kiss her goodnight and tell her, “You are brave, you are smart, and you will move mountains,” I know this to be so very true.
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