The J.P. Story: Early steps

Posted on September 24, 2014 by jeffcuz

Dad’s note: In honor of J.P.’s 12th birthday, I’m writing “The J.P. Story,” which looks back at our journey through birth and now approaching teen-hood. I hope you enjoy. The eighth chapter looks at how we got started on our journey with J.P. after being discharged from the hospital. To start at the beginning of the story, click here.

I remember those first few months of life with J.P. as being full of confusion.

Don’t get me wrong, I felt like I began to understand J.P. pretty quickly. Paige and I could pick out our son’s cry in a room of 10 babies or more.

We also knew when he was hungry, sleepy, hurting, etc.

It’s one of those built-in mechanisms that seems to kick in as soon as a child is born and specifically links parents to baby.

The confusion arose with services from the state and through insurance, how to get them and who would pay for them.

In the first weeks of J.P.’s life, Paige and I knew we needed to get started with therapy for him, especially physical, occupational and speech.

We heard other people talking about Part C and Early Steps. My thought was, “Part C? What about Parts A and B?”

It’s all part of the Individuals with Disabilities Education Act, which is a federal law that deals with how states and public agencies provide services for children with special needs.

The federal government provides money to the states to pay for therapies and intervention for children who qualify before they enroll in school.

Part C of IDEA tackles early intervention or the time before children with developmental delays enter school. The goal is to give them a head start at education and try to get them ready for enrollment in prekindergarten. Part B deals with special education in the school, and Part A deals with the general provisions of the law.

J.P. was able to receive therapy visits in our home. His therapists worked with him on sitting up, rolling over, getting up on all fours and preventing spasticity.

His occupational therapist worked on sensory integration, picking things up and manipulating them.

Paige with J.P. at speech therapy with Debra Beckman.

We were very happy to gain the services of Debra Beckman for oral motor and speech therapy. Beckman is a nationally recognized therapist who has developed protocols used around the world. J.P. later appeared on a magazine cover with her.

Even after getting J.P. home, eating remained a struggle and took up more time than it should, especially when trying to get him to take his medicine.

I worried about J.P. not getting the amount of calories needed each day and therefore failing to gain weight and grow.

Paige and I knew the alternative was having a feeding tube placed and that just wasn’t an option for us.

Our family was all about eating, and we had plans for J.P. to be a part of that. My mother-in-law is a fabulous cook, and I couldn’t imagine my son not being able to enjoy her chocolate chip cookies and yummy cakes.

We pledged to do everything to get J.P. to eat by mouth, and we knew Beckman was the best person to get us where we needed to be to make that happen.

In addition to therapy at home, our physical therapist recommended enrolling J.P. in the youngster program at the Conductive Education Center of Orlando.

Conductive Education is the Hungarian equivalent to physical therapy in the United States, but it also incorporates elements of occupational therapy and the special education the students would receive in school.

It’s done in a group environment with a one-to-one ratio of students to assistants. Classes are small and led by a conductor.

A parent takes part in the Youngster Program with the child in order to learn the best ways to continue what is learned at class inside the home.

The classes are not covered by insurance, but families in Florida can choose Conductive Education instead of traditional school and use the McKay scholarship to help pay for tuition.

I was amazed at the positive attitudes of the conductors, and the way the children worked throughout the session to incorporate the skills they were learning in everything they did.

It’s like learning a second language. Isn’t the best way to learn by going somewhere where it’s the primary language spoken and immersing yourself in it?

The way the school was run and the people involved in the program impressed me so much that I joined the board of directors for several years and served as vice chairman. The place still has a special place in my heart.

For more information on the program, contact the Conductive Education Center of Orlando at 407-671-4687.

Continue to Chapter 9: Mixed blessings