Next Step Therapy Blog: How Much Is Too Much?

NST-bTracy Cowles, owner of Next Step Therapy and Next Step’s Child Enrichment Center, shares “How much is too much?”

This post is for both parents of special needs children, and the therapists and medical staff members who serve them.

When I first started my career as a Speech Pathologist, I worked primarily in Long-term Care Facilities and Home Health, which meant that I dealt mostly with adults. When I made the switch to pediatrics, it took me a year or two to realize that working with children required a different mindset.

First, adult rehabilitation is usually for just a short period of time, say after a stroke or accident. Therapy will typically last for less than a year. With children, depending on diagnosis and severity, therapy may go on for eighteen years
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Second, adults who need therapy are typically able to follow some directions and have some sense of what they can and cannot do without hurting themselves (unless they have dementia). All small children, and especially those with special needs, require an adult to supervise 24 hours a day.

Third, when an adult needs special help, they are typically the only person in the home that requires additional care. When dealing with a child, there are frequently siblings that also require supervision and care.

It was while working with kids and working with their other therapists that I learned an important truth. Something I had never thought through before. It turns out that I, the speech therapist, felt that being able to communicate was the most important thing for a child to be able to do. The special needs teacher felt that having a child who could think well would lead to communication and self care. The occupational therapist felt that if sensory issues could be dealt with, the child would be able to focus more on self-care, which was their primary interest. The physical therapist realized that this child would eventually be 80 pounds and too heavy to lift, so walking on their own was the most important thing. The dietician wanted to make sure the child was getting enough nutrients and hydration. The psychologist wanted to get behaviors under control. Oh yeah, and the doctor wanted the parent to log all behaviors so they would know how the meds are working. EVERYBODY had a plan. The problem is, if you are the parent, how do you manage all of this???

As therapists, we know that kids who have consistent therapy with a parent who then follows up throughout the rest of the week do the very best and make the most progress. We try to involve the parent in what we are doing for the day and usually leave a list of things for parents to do with the child when we are not there. This is part of the job – and required. However, much to my shame and horror, I wonder how many parents I’ve unknowingly sent over the edge by making too many suggestions. For those that I have, I apologize.

It is physically impossible for a parent to diaper, bathe, feed, clothe, give meds, attend three therapy sessions, keep track of all appointments, and do two hours a day of therapy with a child, while at the same time taking care of other children, keeping house, doing laundry, and making meals. On top of that, we therapists are constantly encouraging the parents we work with to take time for themselves and have time with their partner.

Therapists – keep doing the good work that you do. However, before you give a parent a list of things you would like them to “work on” this week, please ask yourself the following questions:

How many other therapists/professionals does this child have?
Are there other kids in the home?
Does the parent have help (a nurse, grandparent, spouse)?
Does the parent look frazzled?

Make an honest assessment of what this parent is reasonably able to handle this week and only present that many goals. If you are looking at an only child who only gets one therapy and the parent seems calm and engaged – go ahead and give them plenty to do.

Parents – it is critical that what is worked on in therapy one day per week be worked on throughout the week by you. However, if you are finding yourself overwhelmed by the sheer amount of things therapists are asking you to do, you need to say something. Say it nicely, because your therapist probably doesn’t realize that they are overwhelming you.

Example: “These are all great ideas, but I already know that we have a trip to Pittsburgh, a dentist appointment, and the older child has a show at school this week. There is no way I will be able to do all of this. What is the most important thing on this list, so I can focus on that?

Parents and therapists are always working together to help a child make progress. We also have to work together to make sure that parents don’t become overwhelmed. A burned out, exhausted parent is the last thing we want to see, especially if we are part of the cause. In addition, kids need to be kids. We don’t want to see every minute of every day be “therapeutic” for a special needs kid. They need down time, too.

So, therapist, be careful with how much “work” you ask a parent to do, and parents, please be honest with your therapists about reasonable expectations. Everyone will be happier!

Tracy


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