Q&A: How Much Therapy Should My Child with Down Syndrome Receive?

blockquote_bgI have a 12 month old little girl with Down Syndrome. We participate in an early intervention program. Currently, she receives 2.5 hours a week of PT,OT, and developmental and 1.5 hour a week of speech. My question is two fold: First, how do you know if your child is receiving good quality therapy, and second, how much therapy should she be receiving? I do not think she is receiving enough time.

Thanks for your question. It sounds like your daughter is receiving quite a lot of services through early intervention, which is great. Typically, children in EI programs in PA receive one hour per week of each of the services you mentioned, unless the need for more is well justified. Often children do not even begin receiving speech therapy services until age 18 months-2 years, especially if they already have a developmental therapist working with them, unless the speech therapist is working on feeding skills. I am sure this varies from program to program and from state to state. As a therapist, my philosophy has always been quality, not quantity of service…in other words more is not always better.

Does having 5 hours of physical therapy a week make a child progress faster than having it once or twice a week? I can’t really answer that, it might for some children and might not for other children. What I can say is that the philosophy of early intervention is to not only work with the child, but to teach the entire family how to work with the child so that the family can follow through with weekly therapy suggestions and learn how to help the child on a daily basis. Parents and extended families are the ones that make all the difference in early intervention! You know your child best and you are with your child 24 hours per day, we as therapists are there to    help teach you & your child. It is your follow through, not our 1-2 hours a week of service that creates progress and success. Early intervention is not meant to be out patient therapy, we as therapists cannot succeed with your child unless you are helping us succeed.

You can judge quality of service by asking yourself if you understand your child’s goals, both short and long term. You should have an IFSP in place for your child that clearly states what skills you as a family want your daughter to work on and achieve. Each therapist that comes to your home should have a focus to their session which is working toward these goals and objectives. You should ideally be a part of every therapy session and be doing “hands on” with your child with the guidance of the therapist. Most therapists leave progress notes at the end of their sessions which state what the child worked on that day, how the child is progressing and some “homework” for your family to work on for the week or until the next session occurs.

Your child and therapist should work well together and you should have a rapport with the therapist as well. However, this does not mean that your child will not cry during physical therapy or other sessions, since some exercises and therapies are “hard work” for the child and they learn early on that “hey, this lady makes me do stuff I don’t like to do!”.

Keep in mind, therapy is through play at this age, and play is very important. Therapy is play with a purpose. I emphasize the word “play” over the word “therapy”. You do therapy with your child every day without realizing it. You don’t need to focus on the word “therapy”, but rather think that when you simply read a book with your child you are working on receptive language (listening and recognizing pictures) and expressive language skills (trying to imitate new sounds & words), cognitive skills (attention span & memory), and fine motor skills (pointing to pictures). If you are rolling a ball back and forth with your child you are working on visual tracking skills, fine motor skills, gross motor skills, language skills, etc. Children under age 2 typically don’t tolerate sessions longer than an hour from early intervention and I am always careful about overwhelming children with too much too soon. You and your therapists as a team will be able to know what your child can tolerate and will be able to judge the progress she is making.

If you do not think your child is receiving enough service from early intervention, I would discuss this with your team of individual therapists. Some parents still would like more therapy for their child than early intervention provides, and so they seek out private therapy through a local hospital or clinic that is paid for by private insurance.