Discharge day for a preemie is special, but it is just the beginning of a journey that often includes therapy at home. As an Early Intervention therapist, I thought parents could use some insights into what your team is really thinking when they begin to work with you and your baby.
- We know that you are nervous. This is your first experience with a medically fragile child, but it isn’t ours. Most of us have worked in hospitals before, and are well-acquainted with universal precautions, shunts and feeding tubes. We are always looking for signs that things aren’t going well, and we will do everything we can to ensure your child’s safety at all times. That may mean that we will tell you that things like placing a Bumbo chair on a table is a risk, and those chairs do not give your child the correct support for growth. Regardless of what your sister-in-law said about her child.
- We aren’t doctors, so we will not give you a diagnosis, even if we suspect something. Legally, we can’t diagnose, so even though we suspect that your child may have cerebral palsy or another issue, you won’t hear it from us. In the past 15 years, I have seen neurologists in NY delay diagnosing conditions such as CP for well over a year after birth, even when there isn’t any alternative diagnosis that fits. Parents are left waiting and wondering, hoping that it isn’t so. The internet allows parents to learn quickly what all that muscle rigidity and terms like “leukomalacia” can indicate. I suspect that medical liability issues are at the heart of this delay, and it is tearing parents up inside. But we aren’t allowed to tell you our suspicions.
- You are the greatest determinant of therapy success. We can only guide you, demonstrate techniques, positioning, and give you therapeutic activities. What you do every day is essential and will determine much of the success of our work. If we suggest that you hold your baby in a manner that builds head control, reduces arching or encourages reaching, we know that your actions will determine if it works. If you ignore our suggestions without discussing your concerns, or worse, tell us you are doing them when you aren’t ( we can actually tell), you aren’t getting very much from your child’s therapy or your therapists.
- Babies can feel fear or confidence, so ask questions and get more reviews and guidance if you don’t really understand what your therapists have suggested. We do this all day long, and most of us have been handling premature babies for years. We know this is all new to you. No judgements!
