Family

Beyond Therapy Burnout and Parent Guilt

Parents of children with Down syndrome are often familiar with the three therapies most frequently recommended for their child: physical, occupational, and speech therapy. Therapy frequently begins when the child is just months or even weeks old. Once in an established therapy routine, parents may find themselves asking,

“Will my child ever be done with therapy?”

rock-balanceParents and caregivers often work. Children have school and extracurricular activities. Adding weekly therapies on top of it all can be a lot to balance and may lead to burnout. A healthy, supportive family also is important for a child’s development, so it is helpful to understand there are many different ways to meet a child’s developmental needs without always packing a schedule full of therapy visits.

If you are considering private therapy for your child, here are some ideas to help you make your decision.

How long should my child be in therapy?

Therapy does not need to be life-long. However, there may be seasons in your child’s life when physical, occupational or speech therapy is especially helpful to your child’s development. It’s important to ask up front how long the child should be in therapy and to establish goals that both the therapist and parent agree to work to achieve. This is central for learning new skills and accurately reassessing the child’s abilities.

After a few months of therapy, it’s necessary to revisit the goals and identify the child’s progress. Following reevaluation, therapy may continue with updated goals, decrease in intensity or discontinue altogether. Working up front with your therapy team to create child-specific goals will ease the transition to less frequent treatment or discharge from therapy. These objectives also will help guide the team in selecting the most appropriate treatment.

Are there different models of treatment other than weekly sessions with a therapist?

Yes! Depending on the resources available in your area, a variety of treatment options may be available. When selecting a therapy option, it’s important to consider the child’s attention or energy level, medical status, educational commitments, and the family’s time restrictions.

Here are some examples to illustrate different options.

  • For a child receiving chemotherapy treatments who has reduced endurance, co-treatment with bikeoccupational and speech therapy gives the benefit of both specialties during the same session.
  • A child with apraxia often does well with short, frequent sessions with lots of opportunities for repetition.
  • For teens having difficulty understanding boundaries, participating in a small structured group with peers is a great opportunity for modeling and practicing new skills.
  • A short-term exercise group is a fun and practical way for a child to learn about healthy living
  • In a summer session, a preteen can work on balance while learning to ride a bike to be able to hang out with his neighborhood pals.

How do I know I am picking the right model for my child?

Choosing a therapy team and model of treatment is just like selecting a day care or school. Explore the options available, ask other families for recommendations and consider your specific family needs. Then, make the decision you feel is the best fit for this time of your child’s life.

We are burnt out and need a break, but I feel guilty about saying “enough” to therapy.

First of all, never let guilt rule your decisions. Sit down with your partner or a good friend and talk about your concerns. What are your frustrations and how can they be reduced or eliminated? Brainstorm together.

Some common scenarios include:

  • My oldest child is in soccer, my youngest in dance, and we have to fit in therapy for my oldest. There is literally no time to squeeze in another appointment.
  • I am trying to manage my own depression. I can barely take care of myself, let alone take my child to therapy.
  • We had my daughter’s tonsils and adenoids removed last month. Now we’re facing a large bill and can’t afford therapy. I really want to take her for treatment, but we can’t make ends meet.

The most important thing to remember is this:

Your child is one member of your family. They are a piece of the pie, not the center of a wheel.

If you are inundated with financial responsibilities, talk with the facility’s billing department. Many times there are scholarships or income-based fees available. Please keep in mind that your family’s financial stability is not worth jeopardizing for a few months of private therapy.

If you are interested in therapy but the location you prefer is too expensive, check out other private practices or speech & hearing clinic’s at your local college or university. Typically private practices and university clinics have lower fees for therapy. Visit http://www.asha.org/findpro/ to find a certified speech-language pathologist near you. Also, talk to other families. Word of mouth is very helpful in this situation.

Do not, I repeat, do not feel guilty if you need to take a break from therapy. Talk to your child’s therapist about a vacation from appointments and come up with a time frame for restarting. It is important to balance your family’s unique needs.

Coming soon: What to do if you need to change therapists

Adapted from  Your Child’s Therapy: Weighing the Options Bekins, J. (2011)

 

 

 

 

 

 

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8 thoughts on “Beyond Therapy Burnout and Parent Guilt”

  1. Did you ever update with the post about what to do if you need to change therapists? I’d love to read it but can’t find it.

  2. “Your child is one member of your family. They are a piece of the pie, not the center of a wheel” — That is EXACTLY what I told my husband when we got our prenatal diagnosis of DS. We still keep this in mind today.

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