Published: LifeLines for Health, vol. 7 (Spring 2016)

Written by: Janet Brewer, M.Ed

The Webster definition of transition is (n) passage from one state, stage, subject, or place to another (v) a movement, development, or evolution from one form, stage, or style to another. In our lifetime, we transition multiple times as life is always in perpetual motion. Heraclitus the Greek philosopher said, The only thing that is constant is change.

As families or individuals managing hemophilia with an inhibitor, we have become experts at transitioning. Our lives change in the blink of an eye. One moment we are sitting quietly enjoying a cup of coffee and the next thing we know we are inpatient. When life is going along “smoothly” we are waiting for the other shoe to drop. The art of transitioning is an ongoing process. One that begins the moment our lives are affected by hemophilia.

Transitioning in a school setting does not happen all at once either. There are four critical stages within the educational transitioning process; entry at the early childhood to kindergarten level, then middle school, high school, and finally college and/ or employment. Each level hasits own areas of concern and set of communication and skill development.

Stage 1: BE TRUE TO YOUR SCHOOL

One of the most critical aspects of this transition stage is cultivating an open, honest and trusting relationship with the elementary team. Our children are leaving our safe, controlled home environment and moving into what I would call as a teacher, “organized chaos”. There are now many more children surrounding our child, increasing the risk of injury. This is a very stressful transition for every parent and child (as well as the school system). The first step is to meet with the school and institute an individualized health care plan (IHCP) that establishes protocols for any possible scenario to keep our children safe. There will be a lot of communication between you and your child’s teacher and/or school nurse to solidify this relationship. Annual transitions as the child advances through the grades will require reinforcement of that relationship with your school system and teachers. Miscommunications and mistakes are to be expected at each end of the relationship. The vast majority of school systems, especially teachers want to work with you for the benefit of your child’s success; it is there job. Try to remember that your child is one of at least twenty to twenty-five students s/he is responsible for every day.

Learning about hemophilia does not happen overnight; it is a gradual progression of skills. The more often you practice appropriate communication skills to collaborate with your child’s school system, the better your skills will become.

Stage 2: STUCK IN THE MIDDLE WITH YOU

Middle school is the next critical stage within the transitioning process. The positive communication skills you have (hopefully) developed by now will lay the groundwork for this chapter of multiple teachers and subjects. If your child does not have a 504 plan going into middle school, they should, as they will now be learning from a team of teachers. There may also be new members of the team who will become the point person or central advocate for your child such as a guidance counselor or school nurse. You should request that your 13-14 year old child be invited to any meetings that involve them; which is all of them. They need to begin developing and honing the skills necessary to communicate their own needs effectively with your coaching. Some teachers may be uncomfortable with this or indicate that it is not their policy but by calmly explaining that you are teaching your child skills for a lifetime of self-advocacy and transitions, they will understand. You can expect that there may be three or four meetings per year during this transition stage for parent- teacher conferences. There will also be a minimum of two 504 meetings, one at the beginning of the year and one at the end to add, delete or modify accommodations. If your child has an IEP, there will be one annual meeting with your child’s team unless they are up for a re-evaluation that occurs every three years. During a re- evaluation year, you can expect more than one meeting, as eligibility is determined. Parents have asked me if they need to attend all these meeting every year and my response is always “YES”. Yes, it is many meetings. Dependent upon the health of your child and consistent communication, you may rely upon the point person in your team to update you regarding progress or concerns if you cannot attend them all. Make it a point however, to attend the first and last semester/trimester parent-teacher conferences. These are crucial for the year’s success and setting your child up for success and expectations for transitioning into the next grade.

Stage 3: THE TIDES ARE HIGH

This now leads us to the high school transition year. These next four years will move at lightening speed; if you thought the elementary or middle school years went fast, this period of time feels like you blinked and it is over. You and your child will now be negotiating with multipleteachers, multiple semesters and multiple meetings. Communication at this stage can be very difficult between you and your child. Make friends with your child’s teachers, you will need them! Chocolate and gift cards go a long way. Handwritten notes are ALWAYS appreciated. Make it a point to get to know the athletic director or PE teacher if your child has not been excused from PE. This period of non- communication that began in middle school with your child will likely become exasperating to negotiate. The end goal

is age 18 at which point your child is now considered an adult. YEP! Trust me, they use their well-established communication skills to remind you of it frequently starting with the year they turn 17. If your child’s high school has not linked them in with your states’ vocational rehabilitative agency by the age of 16, be sure to make that connection. Don’t forget your child should still be attending meetings (which they may not like) and the school district is federally obligated to invite them. It is wise to start asking by the time they are 15 to begin this process. Dependent upon the state, the eligibility process can take up to a year, so start early. You will find more information at http://www2.ed.gov/ programs/rsabvrs/index.html. Here youcan find facts regarding your individual state’s governance over the Rehabilitation Act of 1973 and what services you or your child may be afforded. Each state is awarded different amounts of funding from the federal government so resources vary from state to state https://rsa.ed.gov/ people.cfm.

Stage 4: SCHOOL’S OUT

No matter whether your child decides on a college career, a safe trade, or a year or two of figuring it out, they will need to use their self-advocacy skills with college admissions, disability services, or a boss. Once they reach 18, parents can no longer be provided with information regarding your child so it is all up to them. They can fall back on their resource contact from vocational rehabilitation no matter what career route they choose. Vocational rehabilitation services can include assistance with obtaining a job, training and in some states college funding. It is well worth the effort to get in touch with them! Just an aside, as a mother who has done the high school/college “rodeo” three times, relax! There is already so much pressure put on young adults these days. Here in Massachusetts with many prestigious private colleges, the message often received is that you must attend a private four-year institution and sleep away from home in order to be successful. This path may be the right one for some children, but not for all. Student loan debt is at an all time high with young adults coming out of college with massive debt and no jobs to help pay it. It will most likely take your child more than 4 years to complete their degree depending upon their health, their level of interest and how many times they change their major. Try to remember that they have lived a life that makes them wise beyond their years in some ways but very naïve in others. Each generation’s lifespan extends longer and longer into old age. In this country, we work hard for a long period of time where leisure and recreational activities are just now being recognized as important to our overall health. They will follow their own path. It will probably make us crazy as parents to watch the trails they go down and what trials they bring; but they were raised to be the best advocates for themselves and we have to trust we taught them well.