Autism Review

Jimmy was especially active and his mom was having a really difficult time keeping him occupied while she filled out his intake paperwork. His mom was a little frazzled as Jimmy darted around the room, jumped onto the chairs, pulled on the curtains (pulling them off the rod!), and banged on the windows. I intervened at the window banging for safety reasons and as I gently redirected Jimmy he lunged for his mom's coffee, and with a spray of cappuchino across the carpeted waiting room he finally paused.

"Oops," he said, as his mom gave him The Stare. Jimmy froze.

Mom froze too, and after surveying the mess she excused herself to the bathroom. I stayed with Jimmy who suddenly realized he was supposed to be sitting quietly.

Mom returned with some paper towels. The unfinished paperwork sat on the chair, and she cried as she dabbed at the rug. Jimmy knew enough to stare straight ahead at the toy on the child sized table and play quietly.

His mom was upset about the rug and worried that it would leave a stain. "I just don't know what to do!" she said between sobs. "I can't even take him somewhere to get help without it being a disaster."

I really didn't care about the rug because it can be cleaned. Also, cappuchino is relatively benign when I think about all the possible things that can get spilled onto a floor. "It's really ok," I said, attempting to reassure Jimmy's mom. She couldn't hear me and asked for some cleanser.

Soap is an emulsifier because it can take a substance like cappuchino and disperse it into another liquid, like water. Soap micelles have long hydrocarbon chains that help isolate oils or grime so they can be 'cleaned' or 'removed.'

I was thinking that maybe the paperwork was more important than the cleanser and that maybe for the short term the water would be enough to provide a diluted mixture to blot up and reabsorb the coffee into the paper towels. That wasn't enough for the mom though. She wanted some cleanser.

I watched the mom scrub and scrub at the floor, and I figured that is what she did with Jimmy too. I imagined her taking Jimmy against a washboard and scrubbing with all of her might. I bet she tried everything she could so that she could remove the behavioral difficulties that interfered with his participation in school.

You can scrub all day sometimes, and it just isn't enough.

Foaming agents are added to detergent products because somewhere along the line of history people started associating soap bubbles with ACTION. The bubbles might help some, but they aren't really required for the emulsification process. That's my very basic understanding of the chemistry of how this stuff works anyway. The mom wanted ACTION. She wanted to see her scrubbing effort make bubbles. Bubbles meant the rug was getting cleaned.

Maybe bubbles would mean that Jimmy's behavior could improve too, if only we were scrubbing hard enough in the right direction and with the right effort.

I found some rug cleaner and dabbed it into the carpet as I knelt next to mom and handed her a scrub brush. I grabbed a second brush and went to work on the carpet.

"I bet we can get that out no problem," I said hopefully as I scrubbed and scrubbed. Jimmy's mom smiled.

Melissa is a happy three year old. She smiled brightly as she played with the 20 year old bead and wire toy in my waiting room. I am amazed at the durability of this toy that was originally a favorite of my oldest daughter. It has been played with by thousands of children over many years. Melissa talked quietly to herself as she slid the beads along their paths. Some of those paths are rather uniform and follow a predictable and simple geometric trajectory. Other paths twist, turn, climb and dip unexpectedly. All of them begin on one side of the toy and end on the other side of the toy.

Melissa's grandmother usually brings her to occupational therapy but her thirty-something year old father also began coming to therapy sessions. He was recently released from prison and a mandatory rehabilitation program. He has a long and repetitive history of substance abuse and criminal behavior. No one knows where the mother is.

Based on conversations we have had, Melissa's grandmother is heartbroken. That has nothing at all to do with her love for her granddaughter - but is more reflective of the love for her son who has disappointed her at every possible turn of his life.

At the end of the session cherubic Melissa hugged my leg goodbye and smiled as she grabbed her grandmother's hand and walked down the stairs toward their car. The father watched the scene as if it were a movie playing out in front of him. I saw pain and worry in his face as he told his mom that he would join them shortly.

After a moment we were alone in the waiting room. "Dr. Chris," he haltingly asked and worried, without much eye contact. "Is it too late for me to connect with my child?"

The question landed heavily on my shoulders and I felt the struggle in my knees as I shifted my efforts so I could find something meaningful to say.

"Of course its not too late" I answered automatically, not knowing exactly where the answer came from. I paused as I heard the reverberation of the assurance in the waiting room. I wondered if I was dispensing fact, or opinion, or maybe it was just hope.

I told him something about the importance of continuing to participate in his daughter's therapy and medical appointments. I told him that constancy is important to preschoolers and that everything he did on a daily basis with her was important. I said some other things.

It was hard to tell if my assurances had any chance of breaking through the curtain of fear and the sense of failure that surrounded him. He heard me, I think, because he shook his head in acknowledgment of what he already knew he had to do - and in some shame of how he had failed in his responsibilities up until recently.

I believe in redemption but I know it does not happen frequently. As he ran with an urgency out of the waiting room to his daughter I wondered if he would find it.

I turned to tidying up the waiting room and couldn't shake myself from the interaction. I looked at the toy, and some of the beads hung suspended in the middle of the wires along their paths. As I moved the toy to the table I pushed all of the beads so that they were neatly arranged at the termination of their paths, because that is where I willed them to be.

I moved those beads, even though I know it really isn't that easy. But I wish it were.

I don't frequently blog about my interest in pediatric injury prevention because our Facebook page is a much more convenient way to share information and messages about that topic.

Today I thought I would tell a quick story about one of the driving events that got me thinking about injury prevention. The thought was prompted by a story on one of my favorite websites, www.safekids.org. They have a feature on furniture tipovers that reminded me of an incident that happened to my son when I was a brand new parent over 20 years ago.

My son was nearly three years old and a very active toddler. I was watching him play in the fenced in back yard and he had his little toys, the family dog, and a toddler sized slide to keep him busy. It was a safe environment, I thought.











He managed to fall off the toddler slide and immediately began crying that his leg was broken. Knowing that toddlers are frequently right when they use this language, I splinted his lower leg and rushed him to the hospital.

Somehow his fracture was a spiral fracture, and this is commonly associated with a twisting type of force applied to the limb. I couldn't really see how he twisted his leg when he fell and my description of the injury didn't match the x-ray. I spent the next couple hours telling and re-telling the story to multiple doctors, nurses, social workers, and just about anyone else they could think to send over to me. I appreciated that they wanted to rule out abuse - but it was scary being on the receiving end of all those questions.

For the inspired, here is an interesting case discussion about tibial spiral fractures in children.

Anyway he was casted and sent home. The doctors put him in a full leg cast because they didn't want him to attempt walking. They didn't understand my son, who was not about to let something like a long leg cast stop him from getting around!

For the first day it was mildly entertaining to watch him attempt to stand, but simple biomechanics placed him at a severe disadvantage. After several hours of trying, I thought he just gave up. I was wrong.

While I believed that he was safely watching television with his cup of juice, snacks, toys, blankets, and everything else safely within reach, I now realize that his toddler mind was just spinning through opportunities and possibilities. When I wasn't looking, he dragged himself over to the entertainment center and attempted to pull himself up using the glass door. Here is a picture of what the entertainment center kind of looked like:













Thankfully the entertainment center was bolted to the wall, but he managed to pull the glass door directly off of its hinges, careening him backwards - causing the door to hit him squarely in the forehead and opening up a rather large gash above his eye. I rushed him to the hospital again.

He was pretty traumatized, and required seven stitches to close the wound. My confidence in safe parenting aspirations was functionally shot - it was a horrible string of misfortune. I thought the worst part was going through another two hours of questioning by the hospital workers who really did not believe my story - but actually it was even worse watching him placed in a velcro restraint board so he would be still enough for them to get the stitches in. It was horrible.

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These events, when my son was nearly three, launched my interest in pediatric injury prevention. I didn't incorporate this interest into my occupational therapy work until several years later when I had the opportunity to help develop a safe transportation program for children who were being sent home from the hospital in spica casts.

Anyway, you can 'Like' our Facebook page if you are interested in receiving periodic information about pediatric injury prevention!

This entry is another study in parenting occupations, and in studying how children help to make meaning for their parents and in turn for themselves. So this is for Caleigh.

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To say that I wanted to tame the yard wouldn't be entirely accurate. That would place the yard in a subservient position to myself, and that isn't really how I felt about it. Rather, I wanted the children to be able to live in it and to play in it, and in its state at the time it just wasn't a habitat that was conducive to children's play and development.

One of the immediate problems was that in the back yard the ground that was ten feet closest to the sliding glass doors wasn't graded properly, so water would tend to puddle against the house. The previous owner was dog-sitting a large golden retriever that got left outside a lot - so that caused the space in front of the sliding glass doors to be a giant mudpit of dog prints. No grass grew there. I tried growing some grass when we moved in but as it was an area of high traffic it just didn't seem to work. I tried to re-grade some of the slope but I didn't have the machinery or enough soil to accomplish the task. It was a circular problem: if the area could grow grass then it would drain better and the grading problem would not be so severe and I could grow grass - but it could not grow grass. Most importantly, the kids couldn't play in that muddy mess.

I am a simple person and I like to approach problems with simple solutions. I had no grass, and the soil nutrients and drainage wouldn't support grass, so I needed to do something that would fundamentally alter the growing conditions. I decided to feed my lawn. The lawn never called out to be fed, and in fact I was always a little frightened by the original Little Shop of Horrors movie but I kept the Seymour-references in mind as I fed my lawn and was always happy because I thought its diet would remain relatively simple.

The solution of feeding the lawn spoke to my sense of order because in turn it solved other problems. Now that we had a septic tank we could not have a garbage disposal and that meant that we couldn't blend table scraps down the drain. That meant I had to throw out lettuce, or onion peel, or carrot and potato skins or other vegetable matter into the garbage. It made no sense for me to throw vegetable matter into a plastic garbage bag where it wouldn't naturally decompose, so instead I liked the idea of feeding the leftover vegetables to the patch that couldn't grow grass. This was an excellent solution because I am fundamentally opposed to feeding chemicals or unnatural products into my living space. For over a year I took all that vegetable matter and dumped it into the dirt - with a lot of complaining from my family who was not on board with the plan. My wife was certain that it would attract animals, but I also knew that dumping the onions and mixing in a little hot pepper would repel skunks - and so that solved yet another problem that we were having. I was so pleased with this plan because it addressed so many problems: not growing grass, not being able to have a garbage disposal, finding a way to avoid use of chemicals or fertilizers, and not wanting skunks around the house.

Within two years grass (and clover and other native weeds) filled in the whole area. The root systems bulked up the soil and we didn't have drainage problems any longer. I still fed the grass with onion peel and other cut up vegetable waste because it just seemed like the right thing to do. I think that my golden retriever might have eaten some of it though. I'm not sure.

The grass was green, the lawn was dry, and the children could play - and for many years I thought that was the end of the story.

The unexpected conclusion is that many years later my daughter Caleigh played the lead role of Audrey in Little Shop of Horrors when she was a high school senior. At the end of the play she sang her solo and got consumed by the plant and my smiles and happiness were mixed in at the multiple layers of meaning that were all realized in her lifetime around that song. Now that it's all over I wanted to give her this full story so that now she understands what went into her being able to really live and play somewhere that's green.

A sad story has been in the news recently about a parent who allegedly murdered her children who were diagnosed with autism. 911 tapes and other evidence indicate that the family was having difficulties coping with the diagnosis and care of these children.

Several years ago I put some thoughts together regarding efforts I wanted to make in my own private practice to support mental health of parents. I based my original ideas on Leading Health Indicators of the Healthy People 2010 project. Perhaps it is time to assess our progress and lack of progress on these indicators. I understand that Healthy People 2020 is due out this year - and we need to remember that it is not enough to just talk about how these issues are important. We need to actually DO THINGS that will help to improve the health of children and families.

Here were my thoughts on this subject five years ago. I am afraid that if this case in the news now is any indicator that we still have some work to do:

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Parents who have children with disabling conditions are at an increased risk for psychopathology as compared to parents with typically developing children (Fuller and Rankin, 1994). Parenting occupations are more complex and challenging when children have disabling conditions; increased demands on parents contribute to changes in normal parent-child interactions (Anastopoulos, Shelton, DuPaul, & Guevremont, 1993). In addition to the directly negative impact that stress causes to the parent, parental stress has been associated with increased child behavioral problems and intergenerational psychopathology, including depression (Baker, 1994; Ellenbogen & Hodgins, 2004).

Many child-centered and parent-centered factors may have a negative impact on development of normal parent-child interactions. Parent-centered factors include emotional and mental health needs that are unmet or poorly addressed by health professionals that can impact interactions. Although research shows that parents are not always able to follow through on professionals’ recommendations, it is known that they appreciate helpful suggestions for activities that promote child development or make caregiving easier (Humphrey & Case-Smith, 2001, p. 123). Shearn and Todd (1997) identified that there are long-term implications when a child has a disability because the parenting role is extended beyond typical expectations. They also state that the expectation of professionals contributes to levels of perceived stress, indicating that the parent’s needs are not being consistently met.

Several occupational therapy authors have also discussed the particular stresses upon parents whose children are disabled and the impact this has on the orchestration of their occupation (Esdaile, 1993; Primeau, 1998; Larson, 2000; Segal, 2000, Cronin, 2004). This literature has added significantly to occupational therapy’s understanding of parenting occupations through narrative analysis.

Relationship to Leading Health Indicators

According to Healthy People 2010 Leading Health Indicators (USDHS, 2002), mental health is defined as “a state of successful mental functioning, resulting in productive activities, fulfilling relationships, and the ability to adapt to change and cope with adversity. Mental health is indispensable to personal well-being, family and interpersonal relationships, and one’s contribution to society.” Mental health was chosen as a Leading Health Indicator because conditions such as major depression are the leading cause of disability among adults in developed nations such as the United States (USDHS, 2002).

Objective 18-9b of the LHI specifically targets the recognition and treatment of depression, which is reportedly the most unrecognized and untreated mental illness cited in the report. Depression is a leading cause of mental illness in women, affecting them at a frequency twice greater than men (Weissman & Klerman, 1992). Occupational therapists often interact with mothers as the primary caregivers to children, making awareness of maternal mental health issues particularly important for practice.

Developing wellness programs that facilitate parental mental health is critical in supporting the objectives of the Healthy People 2010 initiative. Little progress was made toward Healthy People 2000 objectives that focused on controlling stress and seeking treatment for depression (USDHS, 2002). The Centers for Disease Control and Prevention statistics (as cited in USDHS, 2002) indicate that there was a slight decline in the proportion of nurse practitioners who typically inquire about the parent-child relationship and a greater decline in the numbers of practitioners who ask about affective functioning in their adult patients at all. This indicates that an important need is present regarding parental mental health that is not being met.

Contextual influences

The Healthy People 2010 report (USDHS, 2002) provides strong political contextual support for programs that facilitate parental mental health and prevention of illnesses including depression. The stresses of everyday life are a challenge to all parents and all children, and the fast-pace (tempo) of modern life has a negative impact on society’s collective ability to meaningfully interpret and experience normal occupations (Clark, 1997). This fact underscores the importance of addressing the mental health needs of parents whose children have disabilities. Killegrew (2000) identifies that broad ecocultural and contextual factors including perceived time availability, child-rearing strategies, and socioeconomic capital were more likely to dictate family routines than a child’s skills or abilities. Therefore there is substantial benefit to be gained by providing contextual interventions that promote and support parental mental health and wellness. Additionally, as parents of children who have disabilities have high levels of stress as measured on standardized instruments, parental stress management should be considered as an integral part of all occupational therapy programs for children who have disabilities (Esdaile & Greenwood, 2003).

One potential contextual obstacle to consider is that some research indicates that parents may be hesitant to discuss their stress and associated depression for fear of being reported to child welfare agencies (Heneghan, Mercer, & DeLeone, 2004). However, these researchers also indicate that this effect is partially mediated by a trusting relationship with the practitioner. Despite this, parents appreciated support that they did receive, even when it was only in the form of general written information and resources. These findings provide important contextual information to consider in developing an occupation-based program that supports parental mental health.

Existing programs and strategies

The principles behind the inclusion of parent education and support into an overall occupational therapy program was described by Cohn (2001), who discussed the benefits of waiting room experiences of parents while their children were receiving occupational therapy. Case-Smith & Nastro (1993) described dissatisfaction with occupational therapy when parental needs were not being met; they suggest that open communication and consistency are important factors to consider in promoting parental satisfaction. Despite professional calls for a focus on the occupation of parenting (Llewellyn, 1994), there is not much documentation in the occupational therapy literature regarding use of parenting skills as a therapeutic means. Hanna and Rodger (2002) reviewed the occupational therapy literature and identified that the available evidence regarding the efficacy of occupational therapy intervention for parent training and collaboration is limited. However, research completed outside of the occupational therapy profession supports the use of parent training programs for facilitating parental mental health, particularly in the short term and when the groups are offered to mothers (Barlow & Coren, 2003).

Relation to health promotion model

An ecological model as described by Gorin (1998, p.21) incorporates the interrelationships between parents and their environments that lead to stress and may threaten mental health. This type of model considers the environment from a systems perspective, including institutional, social, and cultural factors. Bronfenbenner (1977) suggests that development occurs within a context or ecology. The family’s microsystem, including the local community institutions such as school, religious institutions and peer groups, are all critical influences on health and well-being. The interaction of these various systems creates forums for development to occur, or not occur. These external factors may constitute significant barriers for parents of children who have disabilities; this makes the ecological model most appropriate to consider for any program proposal.

As an example, institutional factors could include local influences regarding availability of resources in a community and even the availability of professionals to provide services. Specifically, local municipalities all interpret IDEA in accordance with their own district policies and procedures. Navigating local special education systems can be highly frustrating to parents and the associated stressors related to obtaining appropriate services for a child who has a disability can be a drain on mental health.

OT centered wellness intervention

Based on the evidence presented herein, there is a strong need for specific attention to be offered to the mental health of parents when their children have disabilities. Generic support has always been a component of occupational therapy intervention in the form of verbal discussion regarding child progression in treatment, or to offer suggestions for a home program. It is now evident that parents need more directed efforts to support their mental wellness. Robust parent education initiatives for all families that receive services is needed.





References:
Anastopoulos, A., Shelton, T., DuPaul, G., & Guevremont, D. (1993). Parent training for attention-deficit hyperactivity disorder: Its impact on parent functioning. Journal of Abnormal Child Psychology, 21, 581–596.

Baker, D. (1994). Parenting stress and ADHD: A comparison of mothers and fathers. Journal of Emotional and Behavioral Disorders, 2, 46–50.

Barlow, J. & Coren, E. (2003). Parent-training programmes for improving maternal psychosocial health. (Cochrane Review) In: The Cochrane Library, 2003. Updated quarterly. (Issue 2.).

Bronfenbrenner, U. (1977). Toward an experimental ecology of human development. American Psychologist, 32, 513-530.

Clark, F. (1997). Reflections on the human as an occupational being: biological need, tempo, and temporality. Journal of Occupational Science, 3, 86-92.

Cohn, E.S. (2001). From waiting to relating: Parents’ experiences in the waiting room of an occupational therapy clinic. American Journal of Occupational Therapy, 55, 167-174.

Cronin, A.F. (2004). Mothering a child with hidden impairments. American Journal of Occupational Therapy, 58, 83-92.

Ellenbogen, M., & Hodgins, S. (2004). The impact of high neuroticism in parents on psychosocial functioning in children: Family-environmental and genetic pathways of intergenerational risk. Development and Psychopathology, 16, 113-136.

Esdaile, S.A. (1994). A focus on mothers; their children with special needs and other caregivers. Australian Occupational Therapy Journal, 41, 3-8.

Esdaile, S. A., & Greenwood, K. M. (2003). A comparison of mothers' and fathers' experience of parenting stress and attributions for parent child interaction outcomes. Occupational Therapy International, 10, 115-126.

Fuller, G. B., & Rankin, R. E. (1994). Differences in levels of parental stress among mothers of learning disabled, emotionally impaired, and regular school children. Perceptual & Motor Skills, 78, 583-92.

Gorin, S. S. (1998). Models of health promotion. In S. S. Gorin & J. Arnold (Eds.), Health promotion handbook (pp. 14-38). St. Louis, MO: Mosby.

Hanna, K. & Rodger, S. (2002) Towards family-centred practice in paediatric occupational therapy: A review of the literature on parent-therapist collaboration. Australian Occupational Therapy Journal, 49, 14-24.

Heneghan, A.M., Mercer, M.B., & DeLeone, N.L. (2004). Will mothers discuss parenting stress and depressive symptoms with their child’s pediatrician? Pediatrics, 113, 460-467.

Humphrey, R. & Case-Smith, J. (2001). Working with families. In J. Case-Smith (ed.), Occupational Therapy for Children (pp. 95-135). St. Louis: Mosby.

Killegrew, D.H. (2000). Constructing daily routines: A qualitative examination of mothers with young children with disabilities. American Journal of Occupational Therapy, 54, 252-259.

Larson, E.A. (2000). The Orchestration of Occupation: The Dance of Mothers. American Journal of Occupational Therapy, 54, 269-280.

Llewellyn, G. (1994). Parenting: A neglected human occupation. Parents’ voices not yet heard. Australian Occupational Therapy Journal, 41, 173-176.

Primeau, L. A. (1998). Orchestration of work and play within families. American Journal of Occupational Therapy, 52, 188-195.

Segal, R. (2000). Adaptive Strategies of Mothers with Children with Attention Deficit Disorder: Enfolding and Unfolding Occupations. American Journal of Occupational Therapy, 54, 300-306.

Shearn, J., Todd, S. (1997). Parental work: an account of the day to day activities of parents of adults with learning disabilities. Journal of Intellectual Disability Research, 41, 285-301.

Travis, J. & Ryan, R. (2004). Wellness workbook: How to achieve enduring health and vitality. (3rd. edition). Berkely, CA: Celestial Arts.

U. S. Department of Health and Human Services. (2002). Healthy people 2010: Understanding and improving health. (2nd ed.). Washington, DC: U. S. Government Printing Office.

Weissman, M.M, & Klerman, J.K. (1992). Depression: Current understanding and changing trends. Annual Review of Public Health, 13, 319-339.

One of the interesting things about my time spent working in a pediatric hospital was learning that mom's advice to kids on 'what not to do' really did turn out to be good advice. Of course when you are a kid no one thinks that if they run with something in their mouth something bad can happen. The truth is that bad things happen all the time but you might not notice unless you happen to be in a place where all those bad things end up being treated.

It is a tragic reality - and the hospital workers have to deal with the stress of seeing these horrible accidents on a daily basis. Sometimes the only way to mitigate the horror was with a dry humor. I remember doing rounds with the neurosurgeon early on a Wednesday morning and marveling at the x-ray showing the point of an umbrella impaled through the roof of a child's mouth and resting squarely behind the child's eyes. It was a miracle that the child survived and after the surgery to extract the umbrella there was not any immediate sign of neurological damage. As we all stared at the miracle the resident said the obligatory, "Mom always said not to walk around with things in your mouth." The quick-witted neurosurgeon deadpanned, "Agreed. But imagine the challenge I would have had if the umbrella opened."

These kinds of events started me on a long journey of participation in child safety awareness activities. I try to post information for people to increase awareness - I think it is very easy to think that these problems are low-incidence events. As I said, unless you are working in a place where you see that product recalls actually happen for a reason I can imagine that it just seems that there are too many regulations and too many rules and too much paranoia and too much tort law.

I'm thinking about all of this today because I was reviewing a monthly list of consumer product recalls. I noticed a pattern of recalls based on drawstrings in children's clothing - there are longstanding rules about drawstrings that CPSC has published but apparently they are cracking down even more on this issue and adding this kind of clothing to the Substantial Product Hazards List.

In my opinion this is an example of a good place for government, and I don't object to tighter standards of control for products (imported or domestic) that can impact the health and safety of children.

I've seen two drawstring accidents in my career. They were both horrible.

I know the summer will be full of promise and fun. Children will make important memories and there is a lot of joy in that fact. Sad things will happen too. I wish they wouldn't happen. Maybe having a healthy level of awareness can prevent some of the sad things.

The clock was ticking past the 10am appointment time, adding much to the level of stress that Michael's mom was feeling. Michael had more important plans than therapy and did not want to come inside the building for his appointment. Over the weekend several thousand maple seeds fell from the trees, covering the parking lot and creating a rather large distraction for any child who had to make their way from their car to our front door.

I watched Michael as he grabbed handfuls of the seeds, stood on top of a stone in the yard (as if this somehow added significantly to his actual elevation!), and launched the helicopters up so he could see them twirl whimsically to the ground.

It was such a simple childhood occupation but it was so much fun, and it caused me to pause this morning because I was a little surprised at how simple the play was and how apparently meaningful it was. Playing with the helicopters evoked happy feelings for Michael - and for me - but not for his poor mom, who for a moment thought that the appointment time was more important than the play! What person who has ever been exposed to maple seeds doesn't have a happy memory of playing with the helicopters?

Among other things, childhood play creates competency precursors for adult functioning. Even though I believe this to be true, I find myself a little taken aback sometimes at the power of childhood play lessons. I told mom it was ok and to let Michael play for a few minutes. He was creating some memories, and I thought that it was important to let the moment happen.

Vortex forces are created at the leading edge of the maple 'helicopter' wing, and this is what causes the lift that carries the seed such a far distance. What seems like a whimsical twirl actually generates a force that carries the seed to a distant destination.

Childhood play does the same thing, actually. I watched Michael launch the seeds, and then I watched him twirl himself in imitation of the flight. Then I thought that he was still so young, and that there were so many places that he would go to in his life. I watched his mom smile as she watched him play.

I guess that today's lesson is that there is something to be said for putting your face into the wind and twirling.

The other day five year old Melissa came stumbling into my office, feet intertwined as she made the final leap over the threshold and into the waiting room. Her arms flailed about her in a desperate attempt to regain her balance, she fell into a chair and held her cheek against the back of the seat as she breathed heavily and said, 'Wow! I almost fell!”

It amused me, mostly because her definition of 'almost falling' is probably the same as anyone else's definition of 'definitely falling.' Her mom followed into the room behind her, rolling her eyes, and undoubtedly wishing that Melissa would be less clumsy or more attentive or perhaps both.

Parents have a unique way of perceiving current problems by projecting them into the future and worrying terribly about whether or not their child will be able to meet the demands of the world and of course meet their greater aspirations. This puts parents into points of conflict with teachers or other school personnel who tend to perceive problems measured against current situational and contextual demands, based on a more relaxed sense of normative functioning and broader tolerance for a range of performance. Measuring performance with a present-based normative model vs. a future-based criterion model creates a situation where schools and parents are often speaking different languages.

The point of this is that the school tends to have little interest in Melissa's tripping around the classroom because even though she is clumsy she can function despite the difficulty, whereas the parent frets and worries that Melissa might forever lack competence and what if in the future she trips and drops an important architectural model for some new project, which of course will cause the firm to lose the contract, and will cause her to lose her job.

Truth almost always exists somewhere between the extremity of these two perspectives. It is true that there are very few architects who are so clumsy that they are jeopardizing their jobs because of their motor incompetence. However, it is also true that if Melissa is so clumsy as a child that it may impact her self confidence and school performance to the degree that it might have an impact on her occupational trajectory.

This is why I create room in my practice for children like Melissa. I have understood for a long time that although the criterion of parents that triggers their pursuit for intervention may fall within the tolerance range of school districts, this should not restrict the freedom of moms or dads to do the things that they want to do as parents for their children. I suppose that I have developed my own set of criteria as well so that I can help parents understand if their own expectations are out of whack, but it is rare that I need to pull parents back from a brink of unhealthy expectations.

The end result is that I am a partner with families, often working along with them to try to solve complex problems that impact children's function and performance. Sometimes the pursuit of answers to problems takes me to funny places. Other parents understand this well, often nodding their heads in agreement or understanding or both when I try to describe what I do. Other times I find myself trying to explain these complexities to people who struggle to understand the point.

Anyway, Melissa is a good example – she can't figure out what shoes go on what feet and this is all related to her impaired perceptual motor skills. However her language skills are significantly advanced, to the point where she can entertain and engage an adult in conversations that are far beyond her chronological age. In school she can read but not write, but at this age there is little expectation for writing, and so her performance falls within the broad range of tolerance. There is no therapy in school for her based on his overall performance and this is why the parent is bringing her in for private therapy.

Melissa seems 'smart' and 'competent' to most people because her language is so advanced, but the parent is concerned that she can't hold a pencil and she can't walk without tripping. The initial goal is to get her to wear shoes on the correct feet, but she is smart and she resists intervention – perhaps because she is already developing a sense of not liking to be incorrect. This is a natural compensatory response for a bright child – why would she want to be told she is wrong – so she uses her language skill to try to walk circles around people when they try to engage her in conversations about learning left from right.

I have tried nearly every trick I know, but she remains resistant. Last week I made up a tall tale and told her that even I mixed up left and right so I have to put a piece of tape in my shoe to remind me which is which. I taught her how to look at her hands and how her LEFT hand makes a natural 'L' shape when she holds her thumbs away from her hands and looks at them. Of course she didn't believe me, but I planned it well before the session so I took off my shoe and proudly showed her the large piece of tape with the letter 'L' on the insole of my left shoe. I showed her how I check to see which hand is my LEFT and how that helps me know that I have to put the shoe with the 'L' on my LEFT foot. She was intrigued, and promised to think about it.

I kind of forgot about the whole thing as I went about my weekend activities, up until a serious looking TSA employee at a midwest airport held up my shoe in front of a line of a few dozen people and loudly asked, “What's this tape inside your shoe with an 'L' on it – do you need reminders to know which is your left foot or something?”

I paused for a moment, wanting to explain about normative vs. criterion based expectations, about the worries and fears of parents, about the intransigence of highly verbal children who have mild perceptual motor delays, about my own willingness to tell tall tales in order to help families get their children where they want them to be, and so much more.

A few dozen people stood in silence – hanging in expectation of a response that wasn't happening. There was too much to explain, and not enough time, and I began thinking that this was going to turn into a blog story.

I don't think any of the people who were at the airport will read this, but if they do, now they will understand why the middle aged guy in the security line has to label the insides of his shoes so he knows what feet they go on.

Explanation of occupational risk with supporting evidence

Parents who have children with disabling conditions are at an increased risk for psychopathology as compared to parents with typically developing children (Fuller and Rankin, 1994). Parenting occupations are more complex and challenging when children have disabling conditions; increased demands on parents contribute to changes in normal parent-child interactions (Anastopoulos, Shelton, DuPaul, & Guevremont, 1993). In addition to the directly negative impact that stress causes to the parent, parental stress has been associated with increased child behavioral problems and intergenerational psychopathology, including depression (Baker, 1994; Ellenbogen & Hodgins, 2004).

Many child-centered and parent-centered factors may have a negative impact on development of normal parent-child interactions. Parent-centered factors include emotional and mental health needs that are unmet or poorly addressed by health professionals that can impact interactions. Although research shows that parents are not always able to follow through on professionals’ recommendations, it is known that they appreciate helpful suggestions for activities that promote child development or make caregiving easier (Humphrey & Case-Smith, 2001, p. 123). Shearn and Todd (1997) identified that there are long-term implications when a child has a disability because the parenting role is extended beyond typical expectations. They also state that the expectation of professionals contributes to levels of perceived stress, indicating that the parent’s needs are not being consistently met.

Several occupational therapy authors have also discussed the particular stresses upon parents whose children are disabled and the impact this has on the orchestration of their occupation (Esdaile, 1993; Primeau, 1998; Larson, 2000; Segal, 2000, Cronin, 2004). This literature has added significantly to occupational therapy’s understanding of parenting occupations through narrative analysis.

Relationship to Leading Health Indicators

According to Healthy People 2010 Leading Health Indicators (USDHS, 2002), mental health is defined as “a state of successful mental functioning, resulting in productive activities, fulfilling relationships, and the ability to adapt to change and cope with adversity. Mental health is indispensable to personal well-being, family and interpersonal relationships, and one’s contribution to society.” Mental health was chosen as a Leading Health Indicator because conditions such as major depression are the leading cause of disability among adults in developed nations such as the United States (USDHS, 2002).

Objective 18-9b of the LHI specifically targets the recognition and treatment of depression, which is reportedly the most unrecognized and untreated mental illness cited in the report. Depression is a leading cause of mental illness in women, affecting them at a frequency twice greater than men (Weissman & Klerman, 1992). Occupational therapists often interact with mothers as the primary caregivers to children, making awareness of maternal mental health issues particularly important for practice.

Developing a wellness program that facilitates parental mental health is critical in supporting the objectives of the Healthy People 2010 initiative. Little progress was made toward Healthy People 2000 objectives that focused on controlling stress and seeking treatment for depression (USDHS, 2002). The Centers for Disease Control and Prevention statistics (as cited in USDHS, 2002) indicate that there was a slight decline in the proportion of nurse practitioners who typically inquire about the parent-child relationship and a greater decline in the numbers of practitioners who ask about affective functioning in their adult patients at all. This indicates that an important need is present regarding parental mental health that is not being met.

Contextual influences

The Healthy People 2010 report (USDHS, 2002) provides strong political contextual support for programs that facilitate parental mental health and prevention of illnesses including depression. The stresses of everyday life are a challenge to all parents and all children, and the fast-pace (tempo) of modern life has a negative impact on society’s collective ability to meaningfully interpret and experience normal occupations (Clark, 1997). This fact underscores the importance of addressing the mental health needs of parents whose children have disabilities. Killegrew (2000) identifies that broad ecocultural and contextual factors including perceived time availability, child-rearing strategies, and socioeconomic capital were more likely to dictate family routines than a child’s skills or abilities. Therefore there is substantial benefit to be gained by providing contextual interventions that promote and support parental mental health and wellness. Additionally, as parents of children who have disabilities have high levels of stress as measured on standardized instruments, parental stress management should be considered as an integral part of all occupational therapy programs for children who have disabilities (Esdaile & Greenwood, 2003).

One potential contextual obstacle to consider is that some research indicates that parents may be hesitant to discuss their stress and associated depression for fear of being reported to child welfare agencies (Heneghan, Mercer, & DeLeone, 2004). However, these researchers also indicate that this effect is partially mediated by a trusting relationship with the practitioner. Despite this, parents appreciated support that they did receive, even when it was only in the form of general written information and resources. These findings provide important contextual information to consider in developing an occupation-based program that supports parental mental health.

Existing programs and strategies

The principles behind the inclusion of parent education and support into an overall occupational therapy program was described by Cohn (2001), who discussed the benefits of waiting room experiences of parents while their children were receiving occupational therapy. Case-Smith & Nastro (1993) described dissatisfaction with occupational therapy when parental needs were not being met; they suggest that open communication and consistency are important factors to consider in promoting parental satisfaction. Despite professional calls for a focus on the occupation of parenting (Llewellyn, 1994), there is not much documentation in the occupational therapy literature regarding use of parenting skills as a therapeutic means. Hanna and Rodger (2002) reviewed the occupational therapy literature and identified that the available evidence regarding the efficacy of occupational therapy intervention for parent training and collaboration is limited. However, research completed outside of the occupational therapy profession supports the use of parent training programs for facilitating parental mental health, particularly in the short term and when the groups are offered to mothers (Barlow & Coren, 2003).

Relation to health promotion model

An ecological model as described by Gorin (1998, p.21) incorporates the interrelationships between parents and their environments that lead to stress and may threaten mental health. This type of model considers the environment from a systems perspective, including institutional, social, and cultural factors. Bronfenbenner (1977) suggests that development occurs within a context or ecology. The family’s microsystem, including the local community institutions such as school, religious institutions and peer groups, are all critical influences on health and well-being. The interaction of these various systems creates forums for development to occur, or not occur. These external factors may constitute significant barriers for parents of children who have disabilities; this makes the ecological model most appropriate to consider for this program proposal.

As an example, institutional factors could include local influences regarding availability of resources in a community and even the availability of professionals to provide services. Specifically, local municipalities all interpret IDEA in accordance with their own district policies and procedures. Navigating local special education systems can be highly frustrating to parents and the associated stressors related to obtaining appropriate services for a child who has a disability can be a drain on mental health.

OT centered wellness intervention: A call to action

Based on the evidence presented herein, there is a strong need for specific attention to be offered to the mental health of parents when their children have disabilities. Generic support has always been a component of occupational therapy intervention in the form of verbal discussion regarding child progression in treatment, or to offer suggestions for a home program. It is now evident that parents need more directed efforts to support their mental wellness. All occupational therapists who work with children should look for ways to support the mental health of parents.



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