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Finding Good Therapy Services for Your NICU Baby

“Any questions?” she asked at the end of the tour.

My mind was searching, grasping for something to ask, but I was so distracted and overwhelmed by all of the medical equipment. I couldn’t contain my tears any longer. They started spilling out. I stood in the middle of a rehab gym surrounded by wheelchairs, therapy bikes, balance bars, and a bunch of other equipment completely foreign to me.

We were only days away from being discharged from the NICU. I was imagining going home to a baby swing and bouncy chair. This was looking much further into the future. Much farther than I was ready to go. But regardless of whether or not I was ready, we needed to determine our plan for therapy services. Therapy services for a baby.

Everyone in the NICU kept telling us that early intervention would help him achieve his full potential. One option, of course, was Early Childhood Intervention (ECI) – a state mandated multi-disciplinary program to children between birth and age three who have developmental delays. There appeared to be no barriers to care through ECI.  However, I was concerned about the relationships we formed with my son’s providers while he was in the hospital. I wanted to understand the full scope of the private therapy options, or medical model therapy, available to us as well. As much as I was ready to leave the NICU, I wasn’t ready to leave these people who had become part of our NICU family.

PTExercises2

The Educational Model

Everyone in the hospital kept saying to us, “Well, you can call ECI.” What is ECI? It stands for Early Childhood Intervention and it came about through the Individuals with Disabilities Education Act (IDEA). It’s overall purpose is to help children with delays and disabilities grow to be productive, independent individuals particularly as it relates preparing them to enter the public school system, which if they qualify, can happen as early as age three. The programs vary state to state. In some states you don’t pay for services. In others, there is a family cost share plan based off income and family size. It is a home based, family centered care program, which means someone will come to your home to evaluate your child. Together you come up with a plan to care for him/her. Based off your child’s needs, the staff comes back to your home periodically to teach you how to administer the various exercises they recommend. It’s called family centered care because the majority of the time is spent telling you what to do with the resources available in your environment. The overall hope is that that your child will meet the developmental, social and, educational goals you set together.

The Medical Model

The medical model of therapy mainly addresses medical conditions to help a child realize his/her full potential. These are lifelong skills and and do not solely pertain to education. The medical model is comprised of a medical team that determines the focus of the child’s therapy based on his/her individual diagnosis. Depending on your individual insurance coverage it can take place in your home, a clinic, or a hospital setting. Cost also depends on your insurance and is often limited to a set number of visits per calendar year. The medical model tends to be a more hands-on, one-on-one treatment approach to accomplish the child’s goals. For example, I bring my son in for his appointment and a trained and licensed professional physically takes him from me and starts manipulating his body. She shows me what to do and tells me how often to repeat the exercises. I take a lot of pictures so that I know exactly what to do throughout the week. The therapists set goals and work to achieve them but the goals tend to be more long-term in scope.

After researching both options, we decided on a hybrid approach. Keeping those relationships we had already formed with the Physical Therapist (PT) and the Speech Language Pathologist (SLP) was important to us. Even though it is a thirty minute drive in each direction to get to the outpatient clinic at the hospital, it’s worth it right now. We also wanted to get a good understanding of what ECI had to offer. We hadn’t yet found an Occupational Therapist (OT) to work on his fine motor skills and sensory issues. Fortunately, our local program was offering a licensed OT to our case. That’s how we arrived at the decision we did, at least for the foreseeable future.

I’m still forming my thoughts and opinions around the best therapy strategy. What I do know is it depends on the child and it’s constantly changing depending on where he/she is at on the developmental grid. Therefore, you must continually be open to changing your plan if necessary.

Here are some questions to ask yourself as you evaluate and re-evaluate the best approach for your family:

  • Are the sessions actually helping in some way? You can measure this by the goals your therapist sets, but really you know your child best.
  • Are you getting the services you were promised?
  • Are you getting them at the frequency your child requires?
  • Is the therapist an all around good fit for you and your child?

After she had finished showing us around the rehab center. My son’s PT saw my eyes fill with tears. Hers mirrored mine and began to pool as well. “I work with this stuff everyday,” she said. “It’s easy for me to get desensitized. You are a good reminder of that.”

She went on to assure me that he’s still a baby. That you don’t need any of this equipment for a baby. Just a mat and some toys. And, I will add, a very good therapist.

Kathy McClelland About Kathy McClelland

Kathy McClelland (TX) is mom to two beautiful boys and both spent an extended period of time in the NICU. Her first was a 34-week preemie. Early in her pregnancy she suffered two pulmonary emboli, which revealed two blood disorders. Then late pre-term she developed preeclampsia and HELLP Syndrome. Baby one weighed 4 lbs, 14 oz and was a feeder/grower spending three weeks in the NICU. Baby two was a surprise on multiple levels. Hoping to not repeat the NICU experience a second time, she delivered a 5 lb, 9 oz baby at 37 weeks. However, he was soon diagnosed with a rare syndrome and spent two months in two different NICUs. She writes about faith and finding beauty and hope on her personal blog.

Comments

  1. Beth PuskasBeth Puskas says:

    Thank you so much for writing this, Kathy! While I have nothing but good things to say about the local ECI program where I live in upstate NY, we may be moving later this year to a different county. This means we will have to say goodbye to my baby’s current therapists he sees from the ECI program in our current county (and loves! They’ve helped him every step of the way since his discharge from the NICU last April) and either use our new county’s ECI therapists or see if he would be better off using the medical model of therapy. You have given my husband and I very helpful information and some great advice that I don’t think we’d found elsewhere, so thanks again!

    • I’m so glad Beth. I confess I began by researching and writing this article for myself. I needed to understand from a very elementary level the different types of therapy. I hope that it is helpful for others in similar shoes as ours.

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