Barbara H. Boucher, OT, PhD, PT
My identity as an OT runs as deep as my sense of being an adult. I begin on a personal note because if you have trouble discerning a person’s face or need concrete affirmation of my being you might imagine me to have three heads: As a naive undergraduate I learned at the feet of Jean Ayers’ generation of occupational therapists. For reasons that are most easily characterized as my professional “developmental” trajectory, I became a physical therapist, also. A complete psychological profile of me might read that I received a great deal of reinforcement in an academic setting. From my Doctor of Philosophy (PhD) in Human Development and Family Sciences I claim the title of Child Development Specialist.
If the words “occupational therapy” (OT) are new to you and accompanied your child’s diagnosis, you are not alone in struggling to understand what “OT” means. Just last week my cousin asked me if occupational therapists (OTs) assist people in finding a job. Yes, well, if you mean helping a person through the eleventybillion steps, tasks and activities necessary to obtain a job!
In my own words1:
- Occupational Therapy (OT) is therapy for learning to (do) renew or revive those daily activities we do in everyday life.
- For those activities that cannot be revived, OTs are specialists for adapting the home, person, or activity for participation in that activity again.
To get a more personal or individual benefit from the OT treating your child I offer several request-suggestions for you to make of your child’s therapist. These might appear to be different phrasings of the same questions, but I am intentionally giving you several verbal options for you to choose from in order to gain understanding between you and the therapist. There is no “magic” in good communication (with apologies to speech therapists) but the results can be magically effective for your child.
First request-suggestion: Please show me how to help my child live comfortably in our home with our family.
This broad request can open up a slew of techniques for helping you emotionally adjust to your child’s diagnosis and give you options to choose from or trial. Assuming your therapist is sensitive to your responses, if you are overwhelmed she will adjust the slew to one suggestion at a time. I also expect your therapist to give you the opportunity to prioritize your concerns — to say which issue you would like to address first.
Along with the semantically-strange name for therapy (OT) you are also learning the meaning of a whole new vocabulary to describe your child’s particular responses to sensations. Response to sensations and using sensations as techniques is often misunderstood as curative of the behaviors commonly seen in children with spectrum diagnoses.
I am intentionally suggesting this request first to dispel the thought of OT as curative or medicinal. Therapy is distinctly different from medicine in that it is a process — many repeated actions over time that effect a change. Sadly OT and PT have been “dosed” in a medicinal manner – as though 30 minutes 2x/week will effectively decrease autistic behavior. Sincerely, therapy is not curative so much as therapy can make life more livable.
Sensory dysfunction, rather dysfunctional response to sensations, can accompany cognitive and social learning delays. Problems, issues, neural dysfunction evidenced by extreme responses to sensations are parallel to cognitive and social development, not the sole impediment preventing cognitive and social development. (Similarly, seizures are common in children with autism spectrum diagnoses. Uncontrolled seizures impede learning.) The behaviors that indicate sensory dysfunction can impede learning and need to be managed. An occupational therapist can help you manage your child’s sensory dysfunction. (Alternatively, medicine is the primary means for controlling seizures.)
Dysfunctional response to sensation can mask learning potential, but careful and effective sensory management will reveal a child’s potential on the intelligence spectrum. Indeed, many children have sensory proclivities that do not land them on the autism spectrum. If your child is on a different developmental trajectory, an OT can help you guide your child’s growth and development toward a more independent (functional) life by meeting his innate potential. Home is the place to begin this guidance and I urge you to invest your energy there first before you charge the school with your rights booklet in your raised, fisted hand.
Second request-suggestion: Please help us create a sensory diet for our child.
The analogy of a sensory “diet” is apt for the kind of lifestyle habits needed for managing sensory dysfunction. Food is necessary in life. Diets are individual to tastes — so many foods, so many ways to cook and serve them! I support the sensory diet concept2: “a carefully designed, personalized activity plan that provides the sensory input a person needs to stay focused and organized throughout the day,” but it can be difficult for parents to implement. Some have difficulty reading the daily nuances that indicate a child’s need for a different “snack,” and are best helped by following therapist-prescribed protocols (a diet).
By asking an OT for a sensory diet, you acknowledge and understand that your child’s responses to sensation are interrupting your family life, and you want help to make changes to improve your family’s life. Be open to the idea that you will (by extension) be receiving services from the OT. Treating the family “by extension” is consistent with OT theory and philosophy — the patient/child is seen as functioning within a context or “ecology” and not in a separate clinic setting.
Third request-suggestion: Please explain the services maze available for my child.
With this request you are asking for a map and a compass into the jungle of acronyms and costs associated with your child’s diagnosis. Some of this information is mandated to be given to you (the rights booklet). However, no matter how much regulation dictates that you be informed, unless you go forward expecting to use a machete to cut your own path, you will be at the mercy of eleventybillion “mosquitoes.”
Different and overlapping regulation layers exist for employers, licensing, schools/special education, insurance, Medicaid, and medical care. Each layer might touch (bite) your child’s (your) life. Some of those regulations are particular to your state, and some apply to the entire country but are implemented in a seemingly individual manner — as with the “I” in IEP (Individualized Education Program or Plan) and IDEA (Individuals With Disabilities Education Act).
Commonalities between family experiences abound, so it is good find other families with children with an autism diagnosis — add the words “support” and “advocacy” to your list of desirable jungle plants. Expect your OT to guide you to the sweetness of not feeling alone by showing you where to find other families “flowering” with autism.
If an OT shows you to the thorny “I’m-not-allowed-to-tell-you” bush, consider that a red flag. If you can, rephrase your request. Some information is not allowed to be passed between the therapist and acaregiver, responsible person, patient, or child. If you are able, seek out as much information as you can yourself via the Internet or a library before asking your OT.
Fourth request-suggestion: Please show me how to help my child progress in school.
This request logically follows the previous three requests. Before you armor yourself with rights and expectations for IEP battle, be sure you know your child really well. I have met parents who have been led to believe that a one-on-one aid with inclusion is the Holy Grail of success for a child in public school. Expect an OT to help you see the (many) steps needed for your child to be more independent in public school. OTs are philosophically-primed to understand process — or how-to-get-there.
Knowing your child really well — as in how she responds to different sensations and the many methods of helping her manage her responses — will help you interact with her teacher(s). However, this information is not necessarily the point of an IEP meeting — the P in IEP stands for plan or program, but not the lesson plan. Knowing your child really well you can bring suggestions for possible next achievements in school (goals) to the IEP meeting. I recommend you focus on the annual goals and enlist the help of an OT determine those goals.
Fifth request-suggestion: Please show me how to help my child prepare for life after public school.
Whether your child is recently diagnosed or you are the veteran of years of special education meetings, looking towards the future can be painful. Lean on your OT, calculate her services into the long view for your child.
Using the example of potty training (independence in toileting), ask your child’s OT to project the next step in independence toward that goal. Ask her to give you every method to help your child achieve that step — to incorporate repetition at school. As I once suggested: what if there was only one goal on your child’s IEP and that was independence in toileting? What if everything in your child’s education was directed at independence in toileting? Once free of dependence in such a personal and typical activity of daily living, your child would be free to learn so much more. It would be like, well, having well-managed sensory responses. And once achieved, toileting would not be an issue for the rest of his life. Just imagine.
*snappingfingers* Back to reality, I am not suggesting a single-goal IEP because I think every child can learn in more than one domain at a time. At the same time, there is a relationship between rate of learning and what should go on the IEP. You will have to make decisions between learning components that appear academic, social skills that are cognitive, language dependent, and functional skills like toileting that are tied to motor development. Many children do better if more time is focused on fewer expectations. Since occupational therapists have a holistic mindset, you should mine the brain of your OT to make IEP decisions for your child that will lead to a good quality of life after school.
Throughout my whole career, I have met the patient/client where they are at and sought to nudge them forward or in their own self-determined direction. I truly believe in empowering people to grow beyond the time they spend with me. Expect the same from your child’s OT and you will get a return on the value of every cent you invest in her.