Hand to Hold's Official Blog: Written by Parents for Parents

Learning to Be an Effective Early Intervention Parent

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When my daughter Daphne came home after five months in the NICU, we took her to the first pediatrician appointment not knowing what to expect. After all, she had been followed by just about every kind of specialist in the hospital, and we had a long schedule of appointments with all of them for the coming weeks. What could the pediatrician possibly add?

The most valuable piece of information from that first appointment was the referral to Early Intervention. “I am sure she will qualify for services,” she said. “We may as well get evaluations under way as soon as possible.”

Daphne was first evaluated at five months old (two months corrected). Though it was clear that she had some muscle weakness, she was hitting most of her milestones according to her corrected age.  She was approved for physical therapy services, and we were matched with a Service Coordinator. One of my first concerns was how to stay involved with her services as a working parent. I thought that the best way to go about it would be to schedule therapy in the weekends. The Service Coordinator warned me that only a few therapists worked weekends, but she would try.

Her first PT showed up on a rainy Saturday afternoon. Daphne was still on oxygen, and he rolled her around the floor on a purple blanket. He was chatty and very friendly, but I could see he got a little too engrossed in conversation and rushed Daphne through her exercises. I brought up her feeding challenges, and he said he would recommend an evaluation. He mentioned it a few times, week after week, but never followed through. We never knew when PT would show up, and were stuck in the house waiting for him, sometimes for hours. He drove a juiced up muscle car that seemed to give him trouble every week. When the first quarterly report was faxed to me – very, very late –  I was shocked that he had written down that Daphne had achieved the goal of rolling from belly to back, which was far from true.

That is when I picked up the phone and called the Service Coordinator. I was hesitant, not wanting to get PT in trouble. She cut to the chase: “Do you want to switch providers?” I was surprised. “If he’s not showing up on time and you are not happy with services, we can switch.” She told me there was a PT she really liked, but weekends were out of the question. I agreed to speak with her and see what we could do.

New PT called me promptly. I gave her a summary of Daphne’s issues, and explained that I wouldn’t be able to be there for sessions. She said she worked with lots of working parents, and if I left a notebook, she would write detailed notes every week, and make herself available on the phone whenever I had questions. I made arrangements to be present for the first session, and it was a world of difference. New PT was friendly and warm, but her focus was on Daphne. She gave me tips on positions and exercises we should do at home to advance treatment. True to her word, she filled the notebook with notes, which also included hilarious little drawings of stick figures with props. New PT helped us get new evaluations whenever a new issue came up, and recommended other practitioners she trusted. She got Daphne rolling within a few weeks. She started crawling at 11 months, and walking at 18 months. Soon after Daphne turned two, New PT decided her work was done. Daphne still needed PT, but she convinced us she would be better served by center-based therapy, all the equipment available in a gym. We were not happy to let her go, but we respected her opinion.

Daphne is 3 years old now, and has aged out of Early Intervention. I learned a lot during those years in EI – how to be an effective advocate for my child, how to communicate effectively with therapists and how to let them go the moment I realize they are not a good fit. I also learned that even though I may not be physically present at sessions, my involvement in the process is still essential.

Melissa Haber About Melissa Haber

Melissa Haber (NY) is mother to Daphne, a surviving identical twin who was born at 27 weeks 4 days, moments after sister Leah passed away. Daphne was in the NICU for five long months, and had open-heart surgery to repair a congenital heart defect when she was six months old. At three years old, she continues to battle kidney disease and other delays related to her prematurity. Daphne is proud to have the greatest big sister in the world, six-year-old Lucy. The family lives outside of New York City. Melissa blogs regularly about life with a former micropreemie, parenting challenges, and loss and grieving. You can also follow her on Twitter.

Comments

  1. This blog post was so informative and reassuring. Thank you!

  2. Great post and great to hear about Daphne’s amazing milestones! We are well out of EI now, tackling second grade with a whole new bunch of issues!

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