It’s finally here – Spring Break for the Dow Family Household! Given the great labor we engage in on a daily basis in our pursuit for greatness, I could not wait to kick back and relax. Unfortunately my desire to “chill” has been greatly tempered by my obligation to provide direction for my daughters’ use of their discretionary time to avoid them slipping into the abyss of their autism. Without my intervention my daughters, like most on the spectrum, will engage in repetitious and self-stemming behavior. Some of their behavior appears appropriate to the untrained eye. After all, what teen does not get absorbed watching television or loses himself playing video games or using the computer? The key distinction is when the interests the young person engages in are limited in nature (i.e. only plays on iPad), or the behavior takes precedence over key life functions as daily hygiene, eating, getting dressed, and the like; then there is a problem.
The demands I face are not unique to my family and the needs of my girls. Breaks in routine are often a source of great stress and anxiety for those with autistic spectrum disorders (ASD) and those that care for them. In addition, the hallmark of ASD is the limited and restricted interests. Unlike typically developing individuals, those with ASD do not automatically learn how to play and socialize. Without assistance to direct existing interests and activities or to develop new interests and activities, individuals on the spectrum will likely continue to engage in limited leisure pursuits and live lonely and sedentary lives. These individuals need exposure to activities to develop interests and instruction in activities of interest to enable them to pursue the activities as independently as possible.
Identifying a need exists. Since my girls were young I saw to it that efforts were spent bridging the gaps in their academic skills as well as kept an eye on what they would need to be able to do in world of work. At the same time I prided myself for also exposing both Jordynn and Jocelynn to different recreational experiences, including playing different sports, dining at restaurants, going to church and the movies, attending plays, as well as performing in plays themselves and doing community service. I considered myself on par in preparing my girls for their futures. I thought I had it all covered. That was until I started to take note of the parts of their day that were being directed by others versus those portions of it they selected for themselves. Fearfully it became apparent to me that something was missing; there was something I was not doing and did not know how to do. Based on their current trajectory both Jordynn and Jocelynn were on course to live lives heavily dependent on others for direction and fulfillment.
Though largely overlooked, people in general spend a large part of their lives in leisure activities. Research shows when access to leisure is limited, it can lead to loneliness, social dissatisfaction, boredom, aimlessness, depression, anxiety, and even suicide. None of these outcomes are ones any parents would elect for their children. For young people leisure is especially important because it helps them construct their adult identities. For those young people with autism, leisure time spent with others can help social and language skills. However, because of physical, institutional, and social barriers, leisure activities may be especially difficult to access for those with autism.
Having identified the problem, I quickly moved to find the solution. While I knew how to provide opportunities for my children to engage in recreation, I did not know how to teach the skills to do so successfully. I also did not know how to objectively measure “success.” Ironically, the response to my children’s recreational needs was hidden in plain sight.
Know your rights. According to the Individuals with Disabilities Education Act (IDEA) recreation is a “related service.” This is HUGE! It means recreation is the same as speech, occupational therapy, physical therapy, and the like, and should be targeted in my daughters’ IEPs with measurable goals, a specific program, and monitoring of progress.
In fact, according to IDEA, recreation as a related service specifically includes:
- assessment of leisure function;
- therapeutic recreation services;
- recreation programs in schools and community agencies; and
- leisure education. [Section 300.24(b)(10)]
In addition to being included in a student’s IEP as a related service, IDEA also supports the inclusion of recreation as an independent living skill in secondary transition plans (see http://www.wrightslaw.com/info/trans.faqs.htm for details about IDEA’s requirement for transition planning). Of special note: If a student’s IEP team (as a parent, you are a key member of this team) determines that a student needs recreation programs as he or she moves from school to adulthood, then the providers of these services in the community MUST be invited to participate in the development of that student’s IEP. States’ plans to tend to the mandates of IDEA are reflected in their statutes. I encourage you to review your state laws related to education and special education to better educate yourself of your rights and the rights of your child.
Where to begin. So where do you begin? Well you begin at the beginning of course! Meaning you start by submitting a formal written request for a leisure function assessment to be conducted to evaluate your child’s needs in the area of recreation and leisure. You request that the assessment be conducted by a Certified Therapeutic Recreational Specialists (CTRS). The letter should be addressed to your district’s Director of Special Education, or its equivalent, and include the specific word “request.”
I forewarn you now, your district personnel may not be familiar with leisure function assessments, what a CTRS is, or recreation as a related service depending on what state you are located in. Some states such as New Hampshire, North Carolina, and Pennsylvania are familiar with extending recreation as a related service to their students. Here in New Jersey, where we reside, requests for recreation as a related service is uncommon, and almost like a “hidden secret.” This is no matter and should not be the case as IDEA and state statures are clear on the legitimacy of recreation as a related service. Because of this, I feel obligated to share what I have learned and champion this support be explored for others who need it as well.
In truth, I had to file for due process in order to have a leisure function assessment conducted for my eldest daughter. But my request was granted. In part because to deny my request would actually equate to a violation of “child find,” the mandate of IDEA that schools must locate, identify and evaluate ALL children with disabilities (birth to 21 years of age) in ALL areas of suspected need. Currently, after having evaluations completed for both my girls and recreational therapy identified as being needed for them both, I am in the process of working in conjunction with other members of my children’s IEP teams to spell out what recreation as related service will be for them in their IEPs.
Remain steadfast. I will admit it is not easy being the parent of children with special needs. It is tiring, it is stressful, but it is also necessary. It is however my cross to bear and I embrace it wholeheartedly. I encourage you to do the same. If you are met with resistance from your school district, don’t despair; I implore you do not to give up. As with all things autism, don’t let the barriers you encountered discourage you from your mission. You must remain steadfast, educate yourself, and advocate for your child in a positive manner. Always remember our charge is to prepare our children for their lives after high school (without us), including educational pursuits, employment, and within their communities.