By: Dr. Brian Gannon
For this issue devoted to disabilities and overcoming obstacles, I decided to focus on how such issues are discovered in the first place: developmental screening during well checks. Clearly some medical problems are apparent at birth, like Down syndrome or spina bifida. But most developmental delays occur in normal-appearing children, so how does a parent know when to worry and what to do?
1) At birth, every baby looks perfect to his parents, but some have physical challenges, such as cleft lip or prematurity, which make them more likely to need professional intervention in order to talk and walk at close to the typical ages. If your child has such an issue, your pediatrician will probably mention it and possibly even refer to a specialist early on. But if you as a parent are concerned that your child does not resemble either parent, or just is not progressing normally, tell the doctor.
2) Because so many children appear normal before they begin to fall behind other children their age, it is very important to attend all the scheduled well checks with your primary care provider, even if your child is not due for shots. We discuss typical timing of all the speech and motor milestones (like talking and walking) and if your child is falling behind her peers, we can refer for evaluation or other help.
3) Many doctors will also do specific screening questionnaires looking for autism (at 18 months or so), or even general development at all ages. In older kids and teenagers, it may be helpful to screen for mental health issues such as ADHD, anxiety and depression. If you believe your child’s school performance or behavior has changed since the last visit with your pediatrician, ask about screening. It can be very useful in sorting out the reasons for a change in your teen’s emotional state.
4) Before the third birthday, if a child has delays in speech or other developmental concerns, even feeding, Kentucky has a wonderful free program called First Steps. The first evaluation is at the child’s home or other location of the parent’s choice. This allows the therapist to check the child in a comfortable, familiar environment, giving the most reliable information. If the child has a significant delay from average children related to a particular skill, a different therapist will be contacted to work with the family and child on an ongoing basis.
5) If your child reaches her goals set by the therapist, then she would be developing normally at that point. If she is still not in the average range by the time she turns three years old, then therapy will be transitioned to the school system of zone. Some of our local schools have developmental preschool programs for these children, but if you are zoned to a school that does not have such a program, the school system is still required to help you find resources to help your child catch up by kindergarten.
6) If a delay is not discovered until after age three, then everything starts with the school system. School-based services are very good, but if the child is not old enough for kindergarten yet, it may be confusing to figure out how to get your child assessed. This situation can be more difficult for a parent to navigate, so your pediatrician may need to be more actively involved as an advocate for your child.
7) For children with more severe issues, there are programs such as the Michelle P waiver, available through the local health department, which help parents with things like wheelchairs and handicapped-accessible vehicles. It can be very expensive to take care of a child with special needs, and not all of the expenses are related directly to therapy or medical care. The waiver program is aimed at helping families with these ongoing financial needs.
Americans are becoming more accepting and tolerant of individual differences, including those related to medical problems or physical challenges. For the child with special needs, whether self-limited like a treatable speech delay, or more involved like a severe neurologic disorder, we have more options now than ever to aid families in making their lives easier and their children’s futures brighter.