My twin boys were born with torticollis. The pediatrician noticed the head tilts at the two-month check-up. We then entered a world I did not even know existed . . . pediatric physical therapy. Once a week, we met with the physical therapist and she would stretch their little necks and do a variety of exercises. The therapist would show me how to do the exercises so we could continue the stretches at home.
One of the boys progressed well. The other, who had complications and a NICU stay at birth, was not progressing as quickly. His neck issue was resolving but he seemed to have other delays. The amazing PT noticed he was favoring one side of his body and told me to mention it to his developmental pediatrician. Because of his history and how his body was presenting, the doctors wanted to rule out potential causes.
Therapies were increased by adding occupational therapy and later, speech therapy. After an MRI showed brain damage, my son was diagnosed with Cerebral Palsy. Early intervention is key to opening up functions and working the brain around injury. Thankfully, he had already been in therapy for almost two years before his diagnosis. However, I was overwhelmed knowing that he would be in therapy for the long haul.
What I Wish Someone Told Me About Pediatric Therapy
1. There is financial help available.
- BabyNet: In South Carolina, if your child is under three years old and needs physical, occupational, or speech therapy, you may qualify for BabyNet. This government program provides evaluations at no cost. If your child meets the need, they will receive therapy at no cost up to age three. The family will connect with an early interventionist and the therapists come to your house or child’s daycare.
- IEP: Once the child is over three years old, the public school system can offer therapy at no cost to the family. The child will receive an Individual Education Plan (IEP). This is helpful, however, the child will only receive the therapy needed that pertains to education. There may be a medical need for therapy, but if it does not hinder the child’s education the child may be denied. In this case, the family would seek private therapy.
- TEFRA: If your child has a disability, they may qualify for TEFRA — Medicaid insurance for children with disabilities. This helps cover therapy costs and other medical expenses.
- Insurance and HSA: Pay close attention to your health insurance. Even if you have great insurance with low copays, there may be a limit on how many total therapy sessions are covered. You may also want to look into a Health Savings Account (HSA). This takes pre-taxed income and sets it aside for medical use. Utilizing a HSA saves you money by not being taxed on what goes into that account.
2. It’s okay to be the “squeaky wheel.”
Make the need known. Sometimes you have to push to receive financial help. Call and check on applications so it does not get lost. If your child is denied the first time, get more documentation from the doctor and therapists and reapply.
Take initiative. There is a large demand for pediatric therapy in this area. Many places have long waitlists. Call to check if there have been any cancellations so your child can be seen sooner. Remember, early intervention is important!
You are your child’s advocate. Be the voice that gets them the help they need. You know your child better than anyone else. Write down your concerns and take videos of your child to show the doctor and therapists. Sometimes you have to present your child’s case.
Ask questions. The therapists are well-educated individuals. Usually, they love what they do and are happy to answer questions. Asking questions helps your understanding of your child’s needs. Ask what you can do at home to help your child meet their goals.
3. Momma . . .
. . . take time for yourself. I know, easier said than done. There is a mental and emotional toll while advocating for your child and juggling appointments. Taking care of your own physical, mental, and spiritual health will enable you to better care for your family.
. . . you are enough. You are your child’s mother for a reason. The delays and struggles do not mean you are not doing enough. Some kids just need extra help, and that’s okay!
. . . you are not alone. It feels lonely when you are drowning in paperwork, appointments, and google searches. I promise you are not the only one. The waiting room at your child’s therapy has other families navigating special needs. The diagnoses or struggles may be different, but we are all families trying to do the best for our kids. Make a friend or share something encouraging to lift each other up!