If you’re a parent in a developed country it’s almost certain you’ll be required to put your child/ren through school, in whatever form that takes. For most of us that can be a challenge at the best of times. When you have a child diagnosed with an Autism Spectrum Disorder (ASD), it can be a nightmare. The kids are (mostly) expected to follow rules and instructions, listen quietly, contain themselves physically by sitting still, complete work tasks from a prescribed curriculum, play in identified parts of the playground, and generally remain inside strict boundaries. Classrooms can get noisy and chaotic, with a lot of movement, bright lights, (often) nasty uniforms and other restrictions.
Last week we discussed some of the issues facing a child on the spectrum. We discovered that many of the common difficulties faced by these kids are found in the classroom; sensory issues, having an over active mind, facing anxieties, social difficulties and academic challenges. They are surrounded by the very triggers that make day to day living difficult, and when teachers have the expectation that their instructions be followed; it creates a literal nightmare for your child.
By the time you collect your child at the end of the school day he/she will have spent six hours on high alert, trying to make sense of the world around him/her and process the massive amounts of data that’s been taken in. Any child would find this difficult and tiring, but one on the spectrum would be completely overloaded by the sensory information bombarding their system and trying to comply with the expectations being asked of them. When the home time bell sounds at 3pm your child is ready to explode. And since you are your child’s safe place, is it any wonder that you cop the meltdown?
The good news is that there are things that can be done to support your child to manage their energy during the day and therefore cope better.
Obviously since this involves the school it is necessary to work with the staff. In my experience working with families it’s always a good idea to think of yourself in partnership with the school to achieve the best possible outcomes for your child. When difficulties occur approaching the school from a partnership perspective can have much more positive outcomes than some other approaches.
Choosing a School
Before you can do that though, you need to actually find a school. Within Australia often you’re restricted to particular schools based on where you live; you must live within a specific catchment area. The size of this area will depend on the population and the number of schools servicing the region. The difficulty comes when your available school/s either can’t, or won’t, meet your child’s needs. I have heard of families moving house so they can attend a specific school because the school must, by law, take the enrolment for your child. Choosing to move is a decision that needs to be made when looking at your values and what is best for your family at the time.
Moving isn’t the only option however. If you’re aware of a school that has the resources to give your child the needed support, you have the option of making a case (usually in writing but not always) for your child to attend. Try approaching the deputy or the principal to discuss the issue, and if you aren’t satisfied with their response, you have the option of calling the education department in your region to seek permission. You might like to remember, however, that not all Principals will be happy about you going above their head, so you may find resistance once your child starts school, particularly with the big issues.
Having said that, let’s consider a few things when searching for a school. These are also relevant for a school your child already attends:
Bullying policy- It’s common for kids on the spectrum to experience bullying, so knowing the attitudes of the school (look beyond what is written in their official policy) will help you figure out what you would be dealing with.
The vibe- What feelings do you pick up from the people you speak with at the school? From the reception staff who answer your call, to the principal, do you feel welcomed with a sense of warmth or is it the opposite?
Attitudes toward disability- When you raise your child’s ASD to discuss his/her needs, what response do you get? Listen to what’s not being said just has hard as you do the words coming out of the mouth in front of you. The non verbal cues can tell you a lot. Trust your instincts.
Resources/programs/opportunities- What will your child have access to inside the classroom as well as any school wide opportunities or programs (especially relevant if your child is gifted – or needs extra help – in a particular area).
Homework policy- Is there room to move if your child doesn’t cope with homework? Will he/she be required to stay in at lunch time to complete work? What if classwork isn’t completed?
Special Education Unit- Does the school have a dedicated area for children with special needs? You might like to request a tour to see how they work with kids (even looking through windows can be informative if entering a classroom would disrupt the kids).
Funding- What kind of financial support is available to the school (or your child) based on his/her diagnosis? All schools receive funding based on the number of children (and their issues) enrolled on a specific date during the year (which is usually half way (ish) through first term). If you move schools after that date, funding doesn’t always travel with you. This funding will support teacher salaries and equipment/resources.
Teacher Aide support- Will there be an Aide in your child’s classroom and how does this look? Sometimes the Aide will be attached to your child only and sometimes they will be available in the classroom to help everyone. Will the Aide be in the room all day or will it only be certain times of the day? Answers will depend on your child’s needs, the needs of other children in the room, and the amount of funding made available to the school. If your child is in high school this will look different than if he/she is in primary school. Ask questions.
How they deal with special needs- Are meltdowns considered “bad behaviour”? What happens if your child shows signs of stress? What happens when (insert whatever characteristic your child shows)? Ask questions about how they would deal with your child’s needs.
With any school you choose, look for things that agree with your values as a parent and how they will meet the needs of your child.
Once you have a school, remember, it is not up to the child to fit into the school. It is up to the school to provide your child with the best opportunities and resources to support their development and education. There is a distinct difference between the two. Like any store or business, the school is there to provide a service to your child. If they are not doing so, you have options.
Key People to Work With in a School
Before I get onto those I’d like to discuss some of the key people inside any school. I am specifically referring to the public education system with these, but both Catholic and Independent systems will have similar roles.
Principal – oversees the smooth functioning of the school as a whole. Provides direction to other personnel and steps in when difficulties arise or when other staff are absent, particularly with student discipline.
Assistant/deputy Principal – supports the Principal and acts in this role when necessary. Deals with student behaviour support and supports teaching staff in their roles. Also provides much of parent interaction and deals with day to day issues as they arise.
Guidance Officer/Counsellor – Usually a trained psychologist. Provides guidance to teachers to ensure students’ needs are met (e.g., with education on disability or how to implement specific strategies in the classroom). Often performs psychometric assessments to investigate the cause of difficulties a student may be experiencing in the classroom (e.g., to look for reasons why a student isn’t understanding the work). Also provides emotional support and counselling to students experiencing difficulties.
HOSES (Head of Special Education)- As the title suggests, this person oversees the functioning of the special education unit (if your school has one). Will supervise special education teachers, deal with difficulties for students in the unit and will liaise with parents when issues arise.
Special Education Staff- These may be Teachers or Aides and their roles will vary accordingly, depending on the size of the unit and the number of children attending.
Classroom Teachers- Will provide the front line teaching of children and implement behaviour management.
Chaplains- Provide student pastoral support. Essentially this means they make themselves available to students as someone they can approach to talk to. This is often informal in the yard during breaks. Catholic and Independent schools often provide dedicated pastoral care staff and it’s common for these people to be attached to the religious aspect of the school.
Depending on the size of the school some of these staff may be part time (e.g., it’s common for a Guidance Officer to share their time across 2 or even 3 schools).
Advocating for and Empowering your Child
Now that you know who the key people are, let’s talk about some general things that can empower you to advocate for your child and deal with difficulties as they arise.
Know your rights and responsibilities (and those of the school)- These can sometimes be difficult to find as they aren’t always written down. Try looking in the enrolment pack provided when you enrol your child or the school (or education department’s) website. Knowing them will give you the backup you need when your child isn’t receiving the support he/she needs.
Read about the school’s mission and values- You should find this on the school’s website or displayed on the wall in the administration block. Pay attention to the behaviours/attitudes/words of the staff. Do these match the values and mission displayed?
Talk to other parents- (particularly those with special needs kids). Hear their stories and experiences.
Who to go to within the Education Department
When your child’s needs aren’t being met and issues cannot be resolved, there are key personnel within the Department who can step in. In Queensland, for example, you can make contact with a Principal Education Officer for support and you will find someone similar if you’re in a different state. (there are equivalent people in the Catholic and Independent school systems).
IEP’s- Individual Education Plans are required for each child with a disability and should be completed every 6 months or sooner if needs change. These plans outline different aspects of your child’s education (academic, social, physical, etc) and target specific goals to improve your child’s access to the curriculum. For example, if your child has difficulty with low muscle tone he/she may be provided with special pencils or other equipment to complete work). If you child has multiple challenges 1 or 2 issues will be chosen to focus on, according to the most pressing issues and what is achievable within the 6 month period. IEP’s should be developed in conjunction with key personnel within the school (classroom teacher (in high school teachers for the most important subjects, or case manager will be chosen), guidance officer, HOSES, and you as the parents). They are usually developed during a meeting for this purpose, or a draft may be presented to you for review if the plan is expected to be simple. Regardless of the method you have the right to ask questions and contribute. Remember that you are the expert on your child and you have a valuable contribution to make. Once completed the plan should be signed by everyone present at the meeting (including you) and registered with the education department.
Support people during meetings- For every meeting you attend with the school you have the right to bring someone to support you. This person can simply be there to take notes (helping you focus on what is being said). Or, if you feel you need extra help, this person can also be an advocate for you when you find things difficult. You can choose a trusted friend or some community services have workers who provide this support. The key is to find someone who understands what you’re striving for and will not be intimidated by the number of professionals in the room. A good place to start looking is your Carers Organisation. This person may also be someone in your professional support team, such as your child’s psychologist or other therapist.
Funding- To help you understand how the school provides resources for your child consider asking questions about how their funding works. How many hours support has been allocated to your child? How will this be used in the classroom? What is your child eligible for based on the diagnosis and severity of disability? Is it allocated to your child, to his/her classroom, or the school in general? What is the goal for the use of the funding? You will find that the school will likely receive different funding for equipment so it shouldn’t impact the help your child receives in the classroom.
Professional Therapy- Many schools have access to professionals that can provide therapies for your child, such as speech therapy or occupational therapy. There may be a fee attached (depending on the services provided) so ask your school about how the system works. The benefit of accessing this is that your child can receive the support during school hours (which means you won’t have to run to appointments outside school). Often your child can be taken out of classes that are difficult (such as other languages) in order to attend the therapy they need.
Communication Book- To promote communication between you and your child’s teacher it can be helpful to keep a book in which you can write any concerns, ask questions, or even celebrate the successes/accomplishments (always a good idea). It helps you both to pick up issues early and deal with them before they become big ones. It can be useful, for example, if your child’s teacher knows about a stressful morning routine or other family event, and for you to know about when a substitute teacher will be in for the day (often a stressful time for your child). And using a book can save a lot of time in the morning and afternoon rush. Email communication might be helpful for older students.
Meetings- As a parent of a child with special needs the likelihood of you needing to attend meetings at the school is very likely. To help things go smoothly it can be helpful to prepare in advance. Keep the following ideas in mind for before and during the meeting.
-Write questions and concerns in a notebook to discuss
-Ask for all documentation to be sent to you (or ask for a copy on the day). This way you can check in on any progress and you have evidence of who said what.
-Set goals and time frames for outcomes. And be prepared to follow through on things you promise as well.
-Know your aims before going in. Write them down.
-Take notes during the meeting to help you clarify and to aid recall once you leave the meeting. If you find it difficult to listen and take notes at the same time try asking someone to go with you to write things down.
-Go into the meeting with the aim of working as a team to get the best outcomes for your child. While I understand that sometimes emotions (especially yours) can be heightened remember that sometimes you can catch more flies with honey. A positive working environment will always be beneficial for your child. Consider using phrases such as “I want to make your job easier” (make the phrasing work for your personality). This promotes the feeling of partnership. You might find it useful to practice some of what you want to say before the meeting
-If you have strong emotions as the meeting approaches (especially if communications have been volatile) it may be helpful to speak with someone to debrief and get some clarity before you go in.
-Practice some self-care before and after the meeting. It will help you stay calm and ask for what you need.
-Familiarise yourself with the appropriate complaints procedure. Who do you take things up with first, who do you follow up with and what are your options if things don’t go to plan?
-Try to be factual and keep some of the emotion out of it. It’s often easier to get your needs met if you can remove the emotion (let them out after you leave the school).
-Knowing your rights and the school’s responsibilities before you go in you will arm you with the ability to hold the school accountable.
-Be willing to compromise on the smaller issues in order to get what you want on the bigger stuff. This will require that you be super clear on what you are not willing to negotiate on before you go in.
Wow, what a lot of information! I hope it’s all helpful. If you have any questions please comment below and I’ll do what I can to help. Next week I’ll be back for the last time to talk about how you can stay sane while you parent your ASD child.
The following sites may be useful in helping you find some of the information discussed above. These were found through simple google searches.
Ali Bengough is currently studying her Masters degree in Applied Psychology at the University of Queensland. She has been working as a counsellor for ten years and loves what she does. She is passionate about helping people find their purpose and overcome the barriers that hold them back from living their dreams. She blogs over at The Mindset Effect, where she writes about anything related to the way we think and feel. This is complimented by aFacebook page andTwitter account. She loves to hear from her readers and welcomes feedback on what they would value reading about. When she graduates, Ali plans to use her blog to launch her business, creating a comprehensive site offering a variety of individual sessions, group workshops, online programs and other resources. She is currently in the process of writing the first of many books.