Wednesday, August 1, 2012

We Found “Mary Poppins” for Our Special Needs Child

We Found “Mary Poppins” for Our Special Needs Child

By Dana DeRuvo, R.N.
When the time came to find daycare for my oldest child, Rachel, I researched, interviewed and lamented over the perfect choice. When the time came to do the same for my special needs toddler, Nicholas, the process was much more difficult. Just thinking about it was overwhelming, making it hard for me to move forward in my search. But I persevered.

Nicholas developed spastic Cerebral Palsy, with increased weakness on the left side, as a result of a cardiac arrest when he was nine months old. He is quadriplegic and doesn’t walk or talk. When he aged out of Early Intervention, my school district urged me to enroll him in a school-based program to receive his therapies.

After researching the limited number of appropriate programs available in the otherwise overly abundant childcare in my area, I found a school that served both typical and special needs toddlers as part of its mission.

I liked everything about the school. Still, I developed TMJ (Temporomandibular Joint Disorders) from all my anxiety over Nicholas going to school and being out of my sight for six hours a day.

Soon after Nicholas began school, I met his classroom teacher’s assistant, Louise. I quickly saw the special way she had when she interacted with him and the other preschoolers, those with special needs and typical toddlers alike. Their smiles, sounds and body gestures were of happiness and different from when they interacted with anyone else they encountered.

Nicholas especially responded to all the love she doted on him. She enthusiastically encouraged him to do things that he hadn’t physically tried yet. He proudly pushed himself to attempt to sit as straight as possible and loved hearing her cheers and high-pitched squeals of delight.

I often had medical appointments with Nicholas during this time. My youngest son, Jackson, was a very active toddler. Since I spent most of my time chasing after him at Nicholas’ appointments, the school director, Annabelle, allowed me to have Jackson stay at school while I went to the doctor with Nicholas.

The plan was to have Jackson stay in the classroom for typical toddlers and engage in developmentally appropriate activities. Jackson had never been shy or displayed separation anxiety, but he adamantly refused to go to those classrooms and only wanted to stay by Louise’s side.

This is when I knew I found the healer, caretaker and nurturer that my family needed. Since Louise was burnt out from working in the school system, which did not pay much and where she was responsible for many toddlers, she was very receptive to working with a single family. Having two typical siblings in the family only made the proposition more enticing to her.

I started out having Louise come to our home on Saturday afternoons. This allowed her to become comfortable in our home and learn the children’s schedules. I enjoyed being able to do household chores while not having to care for three children at the same time.

That was the beginning of 10 happy years together. During that time, we both learned to accommodate to each other’s needs. When she needed to care for her grandson, Dylynn, who is only a few months older than Nicholas, he came to our home and played well with Jackson, who was two years younger than him. I never minded her bringing Dylynn to my home. I knew that if she were more relaxed knowing her grandson was well cared for, she would be more relaxed caring for my children.

When one of my children was sick and needed to stay home from school, Louise would have them come and stay at her apartment for the day. I knew they were well cared for and they loved getting individual attention from her.

During the years Louise was with my family, the bond among all of us intensified. When I introduced her I would tell people, “This is “Nicholas’ ‘real mother.’ I’m just the one that gave birth to him.”

It has been five years since Louise has been with us. Nicholas, who is now 18, just has to hear her voice over the phone and he starts smiling, looking for her and making sounds of delight.

As parents, we all want the find the perfect “Mary Poppins” caretaker. For me, it was a matter of keeping my eyes open, staying flexible, listening with my heart and working at the relationship. I’m so grateful I did.

For information about how to find and choose a home health provider, check out Home Health Workers: Finding the Right Fit, on the CP Family Network website.

Editor’s note: Dana has published a memoir, The Ties that Bind, One Family’s Journey of Compassion with a Special Needs Child, of her family’s shared journey with Louise.

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