A Parent’s Checklist for JIA and Beginning School Years
Going to school is a huge event in every child’s life and possibly even more of a trial for the parents. Add to that, entry into school when your child has Juvenile Idiopathic Arthritis (JIA) and the parental stress levels rise even higher. You want your child to be successful in school, to like school, to develop lots of friendships at school, and to be able to participate in all the activities at school.
This article is written as a guide for the parents of children with JIA who are entering the early years of schooling. What can you expect from the school and the teacher? What must you as parents do to ensure a smooth transition each year? What problems will your child likely experience in the early years at school and what should you be concerned about?
Meeting the Teacher
Arthritis is often a hidden and very misunderstood disease. Even though one in every 1000 children develop JIA, few teachers will have “heard” of a child entering school having this disease and even fewer K or Grade 1 teachers will have had any experience with such a child in their class. Consequently, the first step for you, as a parent, is to meet with your child’s new teacher as soon as possible and inform him or her of your child’s JIA condition and limitations. Even if your child has been at the same school for several years, this must be done promptly every September. While the school’s Resource/Special Needs teacher is aware of the situation and will pass the information on, there are often changes of staff during the summer, sometimes even the Resource teachers are new and information is not always passed along as promptly as desired. So you, as a parent, must fill in the gap in September. Do this every year that your child attends school.
School is a very strenuous activity, even sitting in a desk reading or writing can be taxing when you are 5 or 6 years old. Some children need to attend AM Kindergarten because they still take periodic afternoon naps, a fairly common practice for boys who have fall birthdays. For the child with JIA, afternoon Kindergarten is ideal if, and only if the child is able to sleep in longer in the morning, get past the morning stiffness and take his/her time to get ready for school. However, this is not an option for the Grade one child.
Grade one is truly a crucial year in every child’s life. It is the year when the child learns the basics: to read, to write and to calculate. A firm foundation is necessary to build on, and all the other subjects and activities will pivot around these crucial core activities. I recently heard an occupational therapist (OT) suggest that a child with JIA should just get up and get to school “whenever he could make it and to inform the teacher that he might be frequently late”. DEFINITELY NOT!!! This is the absolute worst thing you, as a parent, could do for your child. Remember that you are setting life patterns here. If your child feels that he doesn’t have to arrive at school when everyone else does because “he is special”, why should he ever think it is necessary for him to be on time for anything later on in his life? But even more important than good life habits, is the academic repercussions of such chronic lateness.
In Grade one, almost all the core teaching takes place in the morning. In fact, much of learning to read happens before recess. If your child is chronically late, he is truly at a disadvantage before he has even started his school life. In my many years as a Resource/Learning Assistance Teacher, the only children I ever encountered who did not like school in their Primary years were the ones who could not do as well academically as the other children in the class. Children are often their own worst critics and constantly internally compare what they can do or understand to what their peers can do and understand. If it is necessary to set up an extra early bedtime, do so, but allow ample time in the morning for your child to rise, limber up, get dressed and be at school on time every day.
Fatigue is a huge factor for the child with JIA and yes; he may be exhausted at the end of a day in Grade one. But you should also know that many normal, healthy Grade one children come home from school at 3:00, collapse on the couch and sleep until supper. Do not panic if this happens to your child with JIA, particularly in the fall term. If, however, he becomes too fatigued, it is better for him go home at noon and have an afternoon nap periodically. He may miss some of the “fun” activities but at least he will have a better opportunity to build a good foundation for future learning in school.
JIA is hard on the body and because your child’s immune system is not as healthy as others, your child may contract many of the illnesses and flus that circulate around schools and he may not recover as quickly as an average youngster. You should be prepared in case he needs to spend a few extra days at home resting each month compared to the normal child. If he falls behind in school because of absences, the classroom teacher may request an assessment for the purpose of providing some Learning Assistance or support in the school’s Resource Center. This should be viewed as a very positive step and can even be requested by you, the parent. It is far better for a child to receive Learning Assistance as soon as possible in the early years at school than to allow him to sit in a classroom feeling frustrated and overwhelmed, withdrawing socially or developing behavior problems in an attempt to hide his academic inadequacies.
Most children with JIA will need very few accommodations to be made at school. Rheumatologists will generally treat JIA aggressively with numerous medicines to control the disease and prevent any disabilities from developing. For this reason, the school’s Resource teacher may not feel the need to bring in Consultants to set up special programs. Ideally, your child with JIA will participate in all the activities that he feels comfortable with, including physical education. Most young children love to be active and will try everything they possibly can without any encouragement. However, the teacher must be aware that if your child refuses to do a particular physical activity, she should not press him.
The physical requirements in the classroom must also be checked out. You should make sure that your child has a desk that fits him perfectly, so that his feet reach the floor comfortably when sitting. A cushion or a small stool or chair might also be beneficial if he has difficulty sitting cross-legged or getting up off the floor in the Storytime areas of the classroom. When your child is old enough to be given homework, it is also wise to ask for a second set of text books which may be kept at home so that he doesn’t have to carry heavy books home each day.
If your child has more serious limitations that require splints or a wheelchair, the school’s Resource teacher will access the School District’s consultant Occupational Therapist and request a visit to assess the classroom environment and make recommendations. If there are substantial physical limitations, a Consultant Physiotherapist may also be called in to make recommendations for the child’s physical education program. In larger communities, it is sometimes possible to access your child’s health care team, which includes a nurse, OT, physical therapist (PT), Social Worker and Psychologist, and have these professionals become more directly involved with the school or give advice and recommendations. However, all of these people are often busy and may not arrive to visit the school or contact the Resource teachers until well into October. Remember that you know the most about what your child can or cannot do, so be sure to make the teachers aware of these limitations at the outset of the school year.
Circle of Friends
Most young children are very accepting of another child’s limitations, although they are frequently curious about why someone cannot participate in an activity or why another child needs special apparatus, splints or chairs. While your child may be too shy to talk about his problems/disabilities, it is not uncommon for you, as the parent, to go into the K class and discuss what JIA is with your child’s classmates. If you would like to do this you must obtain the permission of the classroom teacher. Then ask the Resource teacher, or the School Counselor, or someone from your child’s health care team to accompany you so that you have the backup of a teacher or professional familiar with special needs to help you if you encounter any “tough” questions from these youngsters.
On this occasion it is also possible to ask some of the classmates if they would like to become part of a “Circle of Friends” group. In K this group would be responsible for “helping out” whenever necessary at Recess or Lunch hour on the playground or at any other time when your child with JIA may need some physical assistance. In some instances, particularly with older children with more severe disabilities in junior or senior high school, a “Circle of Friends” may help to carry books or to take notes or can be more of a social circle making sure your child is also included in “fun” activities whatever they may be.
Long Term Goals
The long-term prognosis for children with JIA is very positive. With the wonderful medications available now, the majority of children with JIA will grow up to lead active, “almost-normal” lives. Yes, medication will be a significant item in your child’s life and an appropriate daily exercise program will be an absolute necessity. But a positive attitude on the part of the parents will make a huge difference in how your child will face the “ups and downs” of the disease as well as any challenges encountered at school. There are always positive ways to view any situation – find the “silver lining” and frequently remind your child how much progress he has made or how much he has learned or accomplished. The key to your child’s success is encouragement, encouragement, encouragement!