Taking the Leap

Authors: Fiona Jones, Sylvia Rodger, Jenny Ziviani and Roslyn Boyd

Starting High school - A guide for teens with cerebral palsy (CP)

Congratulations! Preparing to leave elementary school is a big step. Starting high school can be a time of new challenges and making new friends. Some other teenagers with CP have given us some advice to share with you to help you know what to expect. Most teenagers with CP find that there can be a few things that are a bit hard in the first few weeks but then things get much easier.

Before you start

Even though most kids don’t like doing homework or assignments, you are going to have to do a lot of them in high school. If you find it hard to get assignments done, talk to your parents and teachers and work out how to make it easier. Some teenagers type instead of write, get their assignments early or get their teachers to help them plan the assignment so they know what they are doing. You need to start practicing finishing your assignments and using a diary to help you plan ahead as early as possible. You can even do this when you are in high school.

“In elementary school, whenever we had assignments and stuff they always reminded you what it would be like in high school. I also learned to touch type from about Grade 3 so I would get better at typing so it would make it easier for me in high school.” - Beth

    Find something that you really enjoy – it might be a sport, music, drama, photography – and start practicing it from when you’re in elementary school. Find out ahead of time what leisure/recreational opportunities are available in your high school and in the community.

    “One of the things, which I would tell other people is find something that they are good at and just keep (doing) that. Keep on going with that because that makes it a lot easier.”             -Raphael

    Some teenagers find it helps to do a summer camp and/or go to an orientation at the high school before they start so that they know some other teenagers.

    In high school your parents usually don’t come into the school. This means that if you are finding things hard, are falling behind with your work or need a teacher to do something differently then you need to ask them about it. It helps to start doing this while you’re in elementary school so that you feel more confident about it.

    The first week

    Most teenagers feel nervous about starting high school. The first few days can be overwhelming, but most teenagers find that they really like high school. If you are feeling overwhelmed, talk to your teacher or your parents so that they can help.

    “Nervous. Oh because I thought oh my god, how big it was, what class am I in, how am I going to make friends and all that.” -David

    Making friends

    Making friends is really important in high school and most teenagers feel a bit nervous about this. Many teenagers find that they make more friends in high school than they do in elementary school.

    “…try to be like a normal kid without cerebral palsy because other kids will accept you for who you are, or kids won’t accept you but the ones that will, will be true friends.” -Sarah

    “It was pretty daunting at first to suddenly find yourself with a whole lot of people that you have no idea who they are. But it was pretty good knowing someone.” -Beth

    School work

    In high school, you will get to try new subjects that are often more interesting than those you do in elementary school. You can choose some subjects and it does not matter if you are really good at one subject but find another one tricky.

    “There are different subjects, like English, Maths, Science still the same but they’re like more into teenage stuff.” -Ramon

    There is usually more homework and it is quite different to elementary school. You might feel quite tired at the end of the week. Try to give yourself lots of time to get your work done, and don’t leave it until the last minute. If you are having difficulty keeping up with the workload, speak to your teachers about creating an Individual Education Plan (IEP). Changes to your workload might be made so that you will have more success.

    “Well I wasn’t used to all the homework, because in elementary school every week you just did the same type of thing, like spelling and maths and stuff like that. But it’s fairly unpredictable what you might get. You might get a whole heap one day and not a lot the next day.” -Beth

    So, start planning early, give yourself plenty of time and know that even if it is hard at the start, it will get much better! Best of luck – be yourself and enjoy it!

    Helping children with cerebral palsy (CP) transition to high school - A guide for school personnel

    The transition from elementary to high school is an important experience in children’s lives. It can be a time of new beginnings, new challenges and new friendships, however this transition needs to be managed carefully. While the first few weeks can be challenging, most children adjust within a term or so of starting high school. Educators and allied health professionals can play an integral role in facilitating this transition particularly where the teenager experiences a health condition such as cerebral palsy (CP). This tip sheet aims to assist you in this process and is based on research undertaken with parents and teenagers with CP making this transition in Queensland schools.

    “She walks out of those school gates and she walks out in confidence and very happy” -Claire

    What can you do?

    • Start preparing early.
    • Ensure open communication between school staff, parents and their child.
    • Have a positive attitude about including a child with CP. In our experience in most situations children can be included with ease.

    "It’s much better than I expected, so much better and he’s happy and that’s the main thing. I think the attitude of the school’s a big thing. If they’re willing to help then all will go well, but if they don’t want it then I think you’ve got an uphill battle.” -Tegan

    “It’s really just about okay they (School personnel) really can give you the support and they’re willing to educate all their staff” -Cassandra

    Towards the end of Elementary School

    • Ensure parents are aware of when their child will need to transition.
    • Start planning before the final year of elementary school.
    • Make sure the parents know what accommodations you are making to support their child so that this can be communicated to the high school.
    • Ensure the child has a way of taking down notes legibly and efficiently. If alternatives are required such as keyboarding, commence training as soon as possible.
    • Rather than excusing incomplete work, support the child to find alternatives to ensure all work is completed. This may include giving assignments or homework early, teaching and monitoring the diary use so that parents are informed, and working on alternatives such as typing for faster completion.
    • Teach the child to use a diary, to plan their assignments and to organise their books.

    “In elementary school, whenever we had assignments and stuff they always reminded you what it would be like in high school. I also learned to touch type from about Grade 3 so I would get better at typing so it would make it easier for me in high school.” -Beth

      Extracurricular

      As early as possible, start working with the child to find something that they enjoy and can succeed in, be it academic, sporting, drama, photography, etc. Work on building skills in this area from a young age

      “I think they should start recognising them more in elementary school so that if they need to be classified and stuff that it can all be done before they hit high school.” -Melissa

      Social

      The social aspect of transition can be one of the most important factors in a teenager’s happiness and success in high school. Social skills training may be needed.

      “Yes, probably social coaching maybe because she (her daughter) asked me “mum how do you make friends, what do you do?” ... Like what are you supposed to talk about and stuff?” They’re all feeling the same emotions; they’re all wanting acceptance...from one another. I think that helped Sarah too, in a way, knowing that all other girls are scared too and don’t really know what they’re doing even though they look like they do. That was sort of helpful for her too.” -Susan

      At High School

      Consider how parents and the adolescent will be involved in sharing their history and planning for the transition. Consider if there will be a key point of contact, and how information will be communicated with their other teachers. A regular case conference attached to a staff meeting may be helpful.

      “Probably knowing that she was supported by the special needs teacher knowing they had all the systems in place. That was a relief for me and knowing that if I needed to I could contact them easily. If ever there were any issues … we could easily email them or they’d email us. If there was any problems they’d email us”. -Claire

      “It’s just like home and school are on the same page. Very much so and it’s all very clear and what the expectations are” -Elise

      Arrange a meeting between the learning support teacher, parents, adolescent and any other pertinent team members during the final semester of the year prior to the adolescent starting at the school.

      “Yeah, well it was great actually just to sit down with the principal and the teacher and it was a nice meeting with plenty of time to say what we wanted to say and Sally had her say. It was very positive” -Cassandra

      Clarify expectations for participation in physical education lessons. Enabling the adolescent to choose if they feel they are capable of participating and providing an appropriate alternative is recommended.

      “She hates doing sports, especially when it’s like volleyball and stuff like that. It’s difficult for her to do those kinds of things. So we’ve just had a discussion and decided to give her an art class instead of sport…” -(Susan

      Some adolescents are participating in sports for people with a disability at a very high level and are grateful for the opportunity to receive specialist sports training.

      “…whether they’re making enough of his ability as an athlete with a disability. I need to sort of have another talk with them…and what I mean by that is not just that he gets selected or nominated but they actually train them, you know teach them how to throw discus and give them some experience with competing and running and things like that. I don’t think there’s enough of that being done.” -Gail

      Consider the options for extracurricular participation available, such as sports, drama, debating or community programs.

      “I think the biggest thing that all the kids need is they’ve got to have some kind of skill that gives them confidence, particularly for kids that are in the intellectually normal range because they’re really aware of what’s going on with their peers.” -Erin

      Check that the adolescent can access the evacuation area in case of fire or an emergency. Alternative plans may need to be made.

      Determine how the adolescent can access all areas of the school safely. They may require extra time to get between classes. Many adolescents prefer not to use an elevator so that they can be the same as their peers, however they are often grateful for the option. They may need a different way of carrying their books between classes.

      “Carrying the books and the distances she will have to travel going from class to class. You know, whether she’ll be really fatigued at the end of the day. I think that will be a big thing because a lot of people don’t realise that it takes Alice – Alice has to put a lot more effort into doing just normal things, like walking to a class or something like that than ordinary children and she does get fatigued.” -Julia

      Consider how support can be offered to the adolescent in a way that is subtle and readily available.

      Determine how the school can work to engender an attitude of support and acceptance of diversity among your students and staff.

      “…talking about different kids have different needs and we all struggle with certain things and some of the kids need help with getting along with others and Luke’s cerebral palsy. It’s just been another little difficulty that anyone could have and they haven’t really made a huge deal of it. It’s just something that we all need support and a little bit of encouragement goes a long way and trying to engender that spirit of group support. Those sorts of things are what they’re trying to do, so that’s good.” -Elise

      Recognise and reward small achievements as would be done for other students, such as an award for improved grades at the end of semester.

      “The rewards are there, if you do a little bit of a, you know you put in a bit of effort, you do a little bit of extra work, it pays off and you get rewarded for it. So there is a lot of schools that don’t recognise those little things along the way and that spurred him on to think well I can do this and okay it’s a bit hard, but if I put in a bit of extra effort then I will get rewarded for it.” -Elise

      Consider allowing access to the timetable in advance, or teaching the adolescent to read it on the first day. Colour coding the timetable to match their books, and having several copies may assist.

      The location of the locker somewhere central and easily accessible, where the adolescent can easily retrieve books is important. Ensure the adolescent can open the combination lock quickly. You can send it home for practice in advance or provide an alternative. If no locker is available, ensure that the adolescent can safely and easily carry their books between classes. Some adolescents find it helps to have a folder, ziplock bag or something similar for each subject, so that they can quickly pick it up and know that they have all the items needed for that subject.

      There are many simple adaptations that are likely to be required and can make a significant difference to the success of the adolescent in participating in the curriculum. It is important to speak with the parents and adolescent about these well in advance. For example:

      1. Adjusting a music piece to require the use of one hand only
      2. Altering the equipment used in home economics or technology, or allowing the students to work in pairs
      3. Providing extra time for exams, homework or assignments
      4. Using alternative equipment for rulers, calculators, protractors, compasses, etc
      5. Providing a larger space for writing down homework, or having a peer write it for them
      6. Providing printed handouts to highlight key points
      7. Allowing extra time to change before and after physical education lessons, and/or allowing adjustments to the gym uniform, such as using Velcro instead of buttons and putting elastic laces on shoes

      “His clothing, I’ve had the buttons changed from buttons to tabs. His elastic laces on his shoes and they’ve allowed him to not get changed, or time in between classes, if there’s sport on.” -Tegan

      Structured guidelines as to the uniform requirements and behaviour expectations are important. Understanding what the adolescent is capable of and supporting them to reach their potential is appreciated by parents and adolescents themselves.

      “They would understand him but also I’m hoping that they do push them, so they don’t just think that’s the level he is, I do hope they push him more. The guidelines for the uniforms and all that sort of stuff as well, I think, and that’s going to be the best education for him so that he doesn’t get overwhelmed.” -Melissa

      Be prepared to accommodate for increased fatigue due to physical effort.

      Preparation and ongoing communication are the key!

      Helping your children with cerebral palsy (CP) transition to high school - A guide for parents of adolescents with CP

      The transition from elementary to high school is an important experience in your child’s school life. It can be a time of new beginnings, new challenges and new friendships, however this transition needs to be managed carefully. Keep it positive! While the first few weeks can be challenging, most children adjust within a term or so of starting high school. Parents have shared their perspectives on this transition with us. Here we share their advice to assist you in planning for your child’s transition to high school.

      “I think it actually turned out better than we could have anticipated.” -Gail

      “She walks out of those school gates and she walks out in confidence and very happy.” -Claire

      What can you do? Parents in our study suggested

      • Start preparing early
      • Keep lines of communication open between you, your child, your child’s elementary school and their new high school
      • Know your rights
      • Become familiar with the school’s policy on accommodations for students with special needs
      • Have a positive attitude

      “It’s much better than I expected, so much better and he’s happy and that’s the main thing.” -Tegan

      Deciding which school to go to - Things to consider

      • What are the values of the school?
      • What is the size of the school?
      • Will your child be able to find his/her way around easily, to fit in and to be supported by their teachers?
      • How will your child get to that school?
      • Can your child get around the school easily?
      • What support is available and how will your child access it? Does the school specialise in support for a particular type of disability, and will a stigma be attached?
      • What are the school board’s policies and procedures related to inclusion and bullying?

      “Look you’re always very anxious because it’s the fact that they have the disability as well as starting high school… and how the other kids would cope with him also, is more important.” -Tegan

      • How willing is the school to hear what you have to say and to accommodate this?
      • Will the school understand your child’s needs but push them to reach their potential?
      • Will your child have friends attending that school?

      “I think in these bigger schools as in for friends and hanging around the right people and everything like that. I think he would get a bit lost and he’d get, he’d get led astray.” -Melissa

      • What extracurricular opportunities are available to your child?
      • What are the expectations of the school around uniform, academic achievement, participation and social integration?

      “They would understand him but also I’m hoping that they do push them, so they don’t just think that’s the level he is, I do hope they push him more. The guidelines for the uniforms and all that sort of stuff as well, I think, and that’s going to be the best education for him so that he doesn’t get overwhelmed.” -Melissa

      Early planning

      • Know what year your child needs to start high school and start planning a few years in advance.
      • Visit the school for open days, and more often if possible. You might like to try:

      1. Walking between classrooms within 3–5 minutes
      2. Finding each classroom
      3. Taking photos to make your own map of the school

      • Have a clear indication of your child’s academic, social and sporting abilities. Figure out what level of support will be required so that your child is able to keep up.
      • Work with your child to develop a means of taking down notes quickly, legibly and comfortably to ensure that they are able to write down assignments and test answers within the time frame allowed. Perhaps early training on keyboarding skills is required.
      • Practice using a diary and planning assignments.
      • Transport: Work out how your child will be getting to and from school. If they will be using public transport, start teaching them early how to read the timetables, pay, get on and off at the right stop and manage if things go wrong. You might like to do several practice runs over the holidays before starting school.

      “It’s not as simple as just getting from A to B. It’s knowing what you have to pack and making sure that he was able to carry that as well as walk the distance that he needed to go and just making sure that everything was packed.”-Elise

      Extracurricular

      As early as possible, start working with your child to find something that they enjoy and can succeed in, be it academic, sporting, drama, photography, etc. Work on building skills in this area from a young age.

      “If you look at able bodied kids, they do sport, they do art, they do dance, they do drama class, they do this, they do that, they get good at something. So by the time they’ve hit high school, most of the kids have got three or four years of some kind of skill building behind them in one area whether it’s netball or something.” -Erin

      Social

      The social aspect of transition can be one of the most important factors in your child’s happiness in high school. Engaging with other children outside of school, such as in extra curricular activities or with cousins, may assist. Other parents have found that supporting the use of socially appropriate technology, such as MSN, can help the child feel more confident.

      “She was a bit nervous to start with because her main concern was she wasn’t going to make any friends because all of her life experience at school she’s never been able to get friends, they just seem to not even though she’s friendly to them they don’t seem to like her because she can’t play active games they like to, so they’ve got to sort of sit and talk. A lot of them don’t like to sit and talk, they like to play. But now at her age that’s what they like to do is sit and talk. That worked out well, so she was really happy.” -Susan

      Before you start

      Joining a club or recreational activity, such as a sporting camp, at the school prior to starting high school may help your child to make friends in a more relaxed environment

      Arrange a meeting with school officials the year before your child transitions. It can be beneficial to involve your child in this meeting, as they will be expected to take on some independence in self advocacy at their high school. You may wish to discuss:

      1. Their Individual Education Plan
      2. Who your child should go to if they need assistance
      3. Their eligibility for an education assistant
      4. How information will be shared with your child’s new teachers? Will there be a key point of contact, and how will they communicate with their teachers?
      5. Physical education lessons: Will your child participate in PE lessons? Will accommodations be needed? What will your child do if they cannot participate? Who decides if your child can participate in an activity or not?
      6. Evacuation plans: Can your child access the evacuation area easily in case of an emergency? Do alternate plans need to be put in place?
      7. Can your child access all areas of the school safely?
      8. When using the stairs, can your child carry their books, adjust to being bumped and climb the stairs quickly? Do they need a different way of carrying their books?
      9. How will your child be supported? How can this be done so that they are not embarrassed, and it is not obvious to others?
      10. How will the school engender an attitude of support and acceptance of diversity among their students and staff?

      “…talking about different kids have different needs and we all struggle with certain things and some of the kids need help with getting along with others and Luke’s cerebral palsy. It’s just been another little difficulty that anyone could have and they haven’t really made a huge deal of it. It’s just something that we all need support and a little bit of encouragement goes a long way and trying to engender that spirit of group support. Those sorts of things are what they’re trying to do, so that’s good.” -Elise

      Timetables:

      • Can you access the timetable in advance?
      • How will the child know what class they need to go to?
      • Can you colour code the timetable/change the size/reduce the information on it?
      • Could you match the colour of their textbook cover to match the colour of the subject on their timetable?
      • Where will you place it? For example, you might like to keep a copy in their room, on the fridge, in their diary and in their locker.

      Lockers:

      • Will there be a locker? If not, how will your child carry their books around during the day?
      • Can your child open their combination lock quickly? It may be helpful to access this in advance and practice, or to consider an alternative.
      • Will the locker be placed near your child’s classroom? Is it placed somewhere that will be easy for them to reach and move books in and out of?
      • Some children find it helps to have a folder, ziplock bag or similar for each subject, so that they can quickly pick it up and know that they have all the items needed for that subject.

      “Carrying the books and the distances she will have to travel going from class to class. You know, whether she’ll be really fatigued at the end of the day. I think that will be a big thing because a lot of people don’t realise that it takes Alice – Alice has to put a lot more effort into doing just normal things, like walking to a class or something like that than ordinary children and she does get fatigued.” -Julia

      Adaptations: These are some suggestions of adaptations that might aid your child, however this should be discussed in light of your child’s strengths and areas of challenge

      • If your child has hemiplegia, will they be able to use the equipment in home economics, technology or music? Can they have the music piece adjusted to be played with one hand only?
      • Does your child need extra time for exams, homework or assignments?
      • Will they be able to use the calculator, protractor, ruler, compass, etc?
      • Can they write down information in their diary easily?
      • Uniform: Can your child get in and out of his/her uniform quickly and easily? Do they need longer to change between class time and sport lessons? Do they need their tie put on elastic? Could you put elastic through their shoelaces eyelets instead of laces?
      “His clothing, I’ve had the buttons changed from buttons to tabs. His elastic laces on his shoes and they’ve allowed him to not get changed, or time in between classes, if there’s sport on.” -Tegan
      • Talk openly with your child about their expectations of high school, and try to help them shape realistic expectations. You might like to have an action plan of how they can handle different issues if they arise, such as bullying, falling behind with schoolwork, getting lost or not having someone to sit with at lunch.

      “It’s just like home and school are on the same page. Very much so and it’s all very clear and what the expectations are and if you are not willing to play the game and live by those rules, then don’t bother coming, it is as simple as that.” -Elise

      Starting high school

      • Try to organise to meet with that friend on the first day.

      “Socially I think he’s made some friends. Being part of a cricket team has been good for him. He actually said to me at the end of last week, he said, mum, on Monday [first day of cricket camp] I really didn’t know anybody and didn’t have anyone to talk to but, he said, now I’ve got 20 odd friends.” -Elise

      • Be prepared for fatigue at the end of the day, the week and the term.
      • Work hard to keep open communication, and know that the parent role is likely to change with your child becoming more independent.

      “I don’t think she was that concerned. I think she was a bit excited. I was probably more concerned than she was. I was fairly involved with the elementary schooling and the biggest difference – I had other parents saying to me when you get to high school you stop at the front gate. You don’t go into the school so being out of – involved in the school has dropped right off so it’s a bigger shock for me.” -Claire

      Preparation and ongoing communication are the key!