I wanted to thank you again for your continued support and patronage of ONH Consulting. I’ve been extremely busy with several new and current clients and have several new endeavors which I hope to share with you in the coming months.

The current world-wide economic downturn has presented some challenges over the past several months. However, ONH Consulting continues to muddle through- primarily because we are the only organization that provides support and advocacy services specifically for families of children with ONH. The major challenges we have experienced have involved our workshops and presentations to professional organizations. Local educational agencies throughout the United States have seen their funding cut to critical levels. In this era of No Child Left Behind and high-stakes testing, staff development is one of the first areas to be affected, particularly when it comes to specialized populations- and the reality is that our kids are a very small target group that special educators and others are currently serving. I hope that we will have the opportunity to work more closely with the professional community as the economy begins to show faint signs of recovery.

I wanted to focus this issue of our newsletter on Transition to adulthood for children with ONH. I realize that raising a child with ONH- or ANY CHILD- CAN BE a JUGGLING ACT. There is school, medications, doctor’s appointments, therapies, and hopefully, some more typical activities like sports, extracurriculars and friends thrown in. In the constant melee of raising a child, it is often difficult to find the time to think about her when she becomes an adult. Will she live independently in her own home in the community or need supported living or nursing care for medical needs. How will she take care of her medical needs? What kind of a job will she have and what kind of support will she need to obtain and keep a job? What about post-secondary options, such as community college, trade school or a four-year college program? These are all questions that you need to start thinking about early- ideally, when your child is still in elementary school

In my case, the process of transition to adulthood began in about the sixth grade. That summer, I began attending summer programming at the Clovernook School for the Blind (now the Clovernook Center) in Cincinnati. I learned most of my daily living skills- everything from dressing myself to using a white cane and riding the bus to using a computer with a screenreader. My point is that the earlier you and (most importantly) your child begin planning for adulthood, the smoother the transition will be.

The following is only a very brief overview of things you need to consider when planning your child’s transition to adulthood.

Transition planning begins at birth. Begin by assuring that the world is a safe and nurturing place. Be sure to instill trust in you and allow him to develop at his own pace. This is especially important for children with ONH, who often develop in a very different way than more typically developing children.

Begin keeping a record of your child’s medical diagnoses, evaluations, test results and recommendations. Read up on the latest developments concerning ONH and be prepared to present information- such as Dr. Borchert’s research literature available through ONH Consulting, FOCUS Families or the MAGIC Foundation- to your doctor’s, school resource team and family members. Remember that many professionals (including doctors) have little knowledge concerning the various effects of ONH on a child’s life.

Involve Early Intervention services from your child’s school district or agency for people with blindness or visual impairment as soon as possible. The sooner you can involve teachers for the visually impaired or other early intervention professionals, the less likely he or she will have significant developmental delays in adolescents or adulthood.

Keep your child stimulated! Expose him or her to various activities in the community. Take your child to the zoo, a baseball game, the amusement park, etc. Be sure to plan for your child’s sensory needs while engaging her in such activities; a typical amusement park setting, for example, might be difficult or impossible for many children with sensory processing differences to tolerate. Involve your child in some type of physical activities, such as adaptive P.E., non-competitive sportsor hippotherapy. Some children who are more mildly impacted or have unilateral ONH might benefit from martial arts.

Try to find respite for your child. Children with ONH can present you as a parent or primary caretaker with many demands. It can be extremely emotionally (and physically) exhausting at times, and you often have to consider your own emotions and attitudes of friends and family members toward having a special needs child. As a parent, there will be times when you need a break or just someone to talk to.

Join a support group in your community. Email listservs and Facebook groups are great for sharing ideas, networking with parents or finding a virtual “shoulder to cry on.” However, Internet lists and social media do not take the place of local support groups, special friends and formal respite resources in your community offered by public and private agencies.

Involve your child in social and recreational activities with peers without disabilities, where appropriate. If your child has attentional difficulties, communication difficulties or Autism-related characteristics, make sure that she /he is receiving services from a speech /language therapist and instruction in social skills. Also, ensure that she /he is receiving sensory integration therapies and support as well as opportunities to positively reinforce socially appropriate behaviors, as they can be very difficult for many of our kids to tolerate- much less perform on a regular basis.

If your child is blind or visually impaired, ensure that she is receiving instruction in orientation and mobility skills, activities of daily living in Braille. The latter is especially important and may be difficult to impossible to teach if the child is tactilely defensive- as I was.

Make sure that your child has an appropriate working knowledge of his /her specific health condition. Ensure that all members of your child’s special education team as well as family members and key people at groups in the community your child is a part of have a basic knowledge of ONH and can reliably contact you and /or appropriate medical care in the event of an emergency. This is critical for children with endocrine deficiencies, difficulty regulating their body temperature or other bodily functions, seizure disorders or other complications associated with ONH.

Work with your schools special education team and others in the community to teach your child basic daily living skills. This can be very difficult with some children who have sensory processing difficulties and require constant, immediate reinforcement. In my case, learning to tie my shoe took ten years.

As your child reaches middle school, your child should be introduced to appropriate assistive technology. This can include books in alternative format (i.e. talking books from the U. S. National Library Service for the Blind and Print Disabled, Bookshare  or Learning Ally in the United States), Braille note takers, screenreaders such as JAWS for Windows, and more low-tech devices such as the slate and stylus for Braille users and writing and signature guides.

Teach your child about the specifics of her health condition and its impact on her life, to the extent possible. If appropriate, help her learn to schedule her own doctor’s appointments and communicate with her doctors and other health professionals independently. This might not be appropriate for many children with ONH until later adolescence or young adulthood due to delays in age-appropriate communication skills.

Adolescence can be a very complex time for many people with disabilities or chronic health conditions, and children with ONH are no exception. Physical changes- including sexual development- can bring feelings that can be very difficult for some children with ONH to process, leading to inappropriate behaviors or regression. Many children also try to minimize their disabilities in order to “fit in”; I’ve found this is especially the case with children who are less severely impacted or attend school in “mainstream” settings with children without disabilities.

This is a time when self-stimulatory behaviors can become very problematic. Children with ONH with severe visual impairment often have limited access to feedback about what is or is not tolerated at school from seeing their peers, so you might need to make sure these skills are taught. Children with an Autism Spectrum Disorder in addition to visual impairment may need other supports to learn (and tolerate and process) socially appropriate behaviors.

Make sure that your child can distinguish public versus private places, boundaries, personal space and acceptable topics of conversation. These were all areas of fairly significant weakness for me- particularly in middle school.

This is the time when most children attend summer camps and participate in activities outside of school. Children with ONH can take part in a wide variety of activities, from Space Camp for the Blind to academic competitions (Math Club, College Bowl) and adapted sports /recreation. This is essential to develop the social and communication skills needed to succeed in high school, a job, or hopefully, post-secondary education.

As your child enters junior high and high school, help your child begin considering career interests in an objective, realistic manner. This is especially important if she has an area of interest, such as a particular radio station, musical artist or topic of conversation.

Make a list of potential careers of interest. Allow her opportunities to connect with those who work in your child’s chosen occupations. Help her understand the demands and responsibilities of a particular occupation, working environment and educational or other requirements. Help your child come up with alternatives. Facilitate opportunities for your child to shadow the person on the job whenever possible.

Prior to the 2004 reauthorization of the Individuals with Disabilities Education Act (IDEA), the law governing special education in the United States, a statement of transition to adulthood was required as part of the student’s individualized education plan (IEP). I still think this is vital, though the law now only requires a transition plan at age 16, which all too few schools implement properly- in my opinion. The transition plan should outline how a student receiving services under an IEP will transition to life after he graduates from high school. The plan should include employment and post-secondary education goals, participation in the community, access to adult health providers, living arrangements and needed government benefits- such as Supplemental Security Income (SSI) and Medicaid in the United States.

I can write another separate article dedicated to post-secondary and vocational transition, as it is a very complex topic. However, there are several main points to remember that are (in my opinion) potential difficulties for some children with ONH.

First, when a child in the United States attends primary or secondary school (Grades K-12) and receives services under an IEP, the local educational agency (school) is legally required to provide a full-range of services, from health management and occupational and speech therapy, to orientation and mobility and assistive technology, to behavior management services in the classroom.

Once she graduates from high school and begins attending work or post-secondary education, she falls under The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973. These laws only require that an employer or “place of public accommodation” make their services and facilities usable by people with disabilities. It is therefore the student’s responsibility to communicate his /her needs for accommodations effectively.

This often requires a fairly high degree of social and communication skills, including working within specific policy guidelines, assertiveness, empathy, understanding others’ perspectives, flexibility and a willingness to compromise. It also involves an in-depth knowledge of the person’s disabilities and their impact on functioning as well as a high degree of resourcefulness and social networking. In short, you as a parent can think of successfully obtaining accommodations at work or college as a sort of real world “final exam” that puts together everything your child learned about her disability, legal rights, strengths and weaknesses, social and interpersonal skills, daily living skills, and knowledge of assistive technology.

Second, there is very little in the way of routine in college. Instead of attending the same classes for six or seven hours each day, a college student typically attends one or two classes a day. These classes last between one and two hours each and may meet only once or twice a week. The assumption is that the student will spend most of her time studying outside of class and coordinate assignments, projects and research papers fairly independently.

Third, a student in college with a disability might need to coordinate accommodations from many different resources simultaneously. I used readers from my university’s office for disability services for some assignments. However, I also had to hire my own readers from the communities surrounding campus and went home on the weekends- using local resources at home extensively to complete college assignments. The college student with disability may also need to work closely with a vocational rehabilitation counselor or other funding resources as well as providers of assistive technology, orientation and mobility and other services. She will need to ask for and manage these services on her own.

Finally, colleges and universities typically offer a wide variety of clubs, social and political organizations, interest groups and fraternities. Students active in campus activities tend to do better and college and the workplace. I’ve also noticed from my experience that the more socially engaged and active students have an easier time obtaining needed accommodations. It isn’t fair, but it’s a fact of life.

In short, good social skills and the ability to work within complex institutional guidelines are vital to success as a student with a disability in both college and the workplace.

I hope this information is useful to all of you, and I thank you again for your patronage of ONH Consulting.

Sincerely,

Christopher Sabine

President

ONH Consulting, LLC