Introduction

It's not uncommon for people to refer to navigating support in Education as a 'jungle', for that describes the journey perfectly. You might start off with what feels like a great plan, a pathway if you will, to getting the best support for your child. And then obstacle after obstacle springs up in the way. Some you can anticipate, and others you will simply not see them coming. 

FASD Ireland has a team that have navigated this 'jungle' over the past 15 years, both as parents and as young people experiencing education in Ireland. We also advocate for parents and carers that are struggling to navigate the education system and supports available. It is useful to share some insights as to what a good map might look like to help you try to avoid some of the common obstacles you will find in the way.

Meeting the Teacher

Foetal Alcohol Spectrum Disorder is usually only diagnosed in very young children when there is physical evidence, such as facial dysmorphia or where pre-natal alcohol exposure has been documented or evidenced prior to the child being born. This means usually the first indication that your child may have been affected by pre-natal alcohol exposure is observed at Primary School.

Before you think, "I should have noticed something..." please wait a moment. Consider... Your child has more than likely grown from a newborn baby to school age with you in their lives every single day. We tend not to notice anything unusual when it has always been a part of our daily routine, and human nature is known to allow us to adapt in our lives without realising it. If you are reading this because you are worried that you exposed your baby to alcohol whilst pregnant, then remember that approximatly 13% of babies exposed to alcohol in-utero grow up receiving a diagnosis of FASD. So your child may not have FASD - they may have one of the associated conditions (you might hear this called a co-morbid) including ADHD or Dyslexia.

Typically, but not always, characteristics of FASD present when your child is between the age of 5-10. So your child is spending a considerable time away from you in school with teachers, SNA's and classroom helpers that have not seen your child growing through their infant years. They also have the benefit of working with many children of all abilities during their career. It is likely that a parent-teacher meeting to discuss your child's progress may be the first time that an issue is flagged. It may be a concern about missing milestones, a flag about academic ability, social and emotional skills are lacking, or that classroom or playground behaviour is disruptive and/or not consistent with your child's chronological age.

There are many different reasons that can be a concern for educators,

and they don't all mean that your child has FASD.

Agree with the teacher that you will give what they have said some thought, and try to arrange to meet with the teacher again in a few days. It's a big boulder of emotion that has been dropped on you - probably when you least expected it - so you will need time to gather your thoughts, seek advice and have a think about how you can support your child at home, and what you would like school to do. It is important to take a moment when you get home from meeting the teacher to reflect on the conversation. Try not to be defensive to what you have heard - and that can be really difficult because it's your child that they have been talking about.

Ask yourself if there are signs that you have noticed at home that may be consistent with what you have learned from school - perhaps you have just not noticed, turned a blind eye or hoped your child would 'grow out of it' or that they will learn that particular skill once at school? It could be anything including needing the toilet with advance notice, simple addition, reading an age appropriate book, telling the time, understanding money, playing nicely with friends, sharing toys, wearing weather appropriate clothes -there are so many things to consider, and it's an endless list. A notebook will become your best friend.

Make sure you meet the teacher a second time and discuss everything that you have had time to think about. Take your notebook with you and write down anything you think you will need to remember during the meeting. At this stage, the teacher is unable to tell you anything about a diagnosis. They may choose to share some of their personal thoughts or experience, however now is not the time. It is far better to keep an open mind as there are so many possible diagnosis. If you and the class teacher agree that your child may need additional support in the classroom, then the next step is to ask to meet with the SENCo.

The SENCo Meeting

It's likely that school will ask you to meet with their SENCo. It sounds mighty official, however remember that the SENCo is one of the school teachers, who has taken time to learn about supporting children who may have additional needs in education. The SENCo may well send you a questionnaire to complete in advance of meeting with them. The questionnaire will have a number of multiple choice questions that may ask you to select 'scores' from 1 to 5 indicating where you believe your child sits from a list of observations you have made in certain home-based scenarios.

There are usually four categories that these questions will ask you about. These are:

• Communication and Interaction needs.
• Cognition and Learning needs
• Social Emotional and Mental Health (SEMH) needs
• Sensory and/or Physical needs.

It is not easy to complete the questionnaire honestly, and often parents or carers will feel guilty answering the questions if the score implies a deficiency - that is perfectly normal. However you must try your best to be as accurate as possible. There is no right or wrong score, the SENCo is looking for an honest assessment from your experience. This will help the SENCo to understand if your child is consistent at home and school or if there is a variation.

The questionnaire is often one of the first building blocks to

 providing the right support for your child in the classroom.

Once you have sent the completed questionnaire back to school, the SENCo will compare your responses to those provided by the class teacher, and any other adults in school that have been asked to complete the same questionnaire. You will then be asked to attend a meeting so that the information collated can be shared with you along with any thoughts and proposals that the SENCo may have in providing support for your child. It is important to remember at this stage, that no additional funding is provided for supporting your child, so the supports will be allocated from the existing school budget. It may be that an SNA already assigned to the classroom could be asked to keep an eye on your child, or that there is a smaller class that your child can be moved to for support at certain periods of the day. Of course, school may concede that your child needs support, and they are unable to fund it - and that means that you will need to continue working with the SENCo to make an application to the National Council for Special Education (NCSE) for additional funding for the Board of Management to provide support for your child.

Application to the NCSE

To be able to make an application to the NCSE is is always important to have a diagnosis. You will read and hear conflicting information about the need for a diagnosis from the NCSE and other state agencies, particularly the Department of Education, however best practice is to have a diagnosis so it can be stated on the application form that the SENCo will submit to the school's locally assigned Special Education Needs Officer (SENO) at the NCSE.

If your child does not have a diagnosis, and you believe that your child may have FASD, you will no doubt have lots of questions and may choose to speak with your GP, your child's GP or make contact with the HSE for further advice. You can also consult information contained on the 'Health' page on this website, or speak to one of the advisors at FASD Ireland.

Never feel rushed into submitting the first application to the NCSE. There are significant loopholes that can result in your child's application being dismissed. It is important that you take your time, and gather as much evidence in that time as you are able to. 

You will be asked to consider what support both you and the SENCo believes your child needs in school. Always consider your responses as if it was about the most challenging time you or the teacher have ever experienced with your child. It can be an uncomfortable application form - designed that way so that you try to suggest that your child does not need much support. However experience tells everyone concerned that the most challenging days do happen from time to time, so the support in place needs to be able to provide adequate support for your child when it happens.

Experience tells us that SENO's are not given training about FASD

 and what support is needed in the classroom and playground environment

It is useful when stating your child's diagnosis, to ensure that you get any co-morbid condition - for example ADHD or Tourette Syndrome - written down at the same time. Incidentally, if there is a diagnosis related to SEMH, then it is advisable for the word 'severe' to precede this, or it tends to be ignored by the NCSE.

The application is submitted by the SENCo directly to the SENO for consideration. Where possible the application form should be accompanied by any evidence you have collected over the years; including CAMHs reports, NEPs reports and GP or Paediatrician Reports. If the evidence you have is more than two years old, then it would be advisable to seek appointments and ask for a written update. This is not always possible - especially with NEPs -however always try your best.

 It is very unlikely that you will be contacted by the SENO, and less likely that you will hear that the application has been approved or rejected. It is advisable to find out who your assigned SENO is, and make contact with them, so that they know you are keeping a close eye on proceedings. This information can be found here: https://ncse.ie/regional-services-contact-list Whilst there is a desire for SENO's to have a good knowledge of your child's school, often they are not local and are based remotely. For example, County Clare does not have an incumbent SENO, the work is shared between County Limerick or County Kerry.

Remember to take their name, email address and direct dial telephone number. You will need it.

It is rare that new applications for SNA support are approved. It is more likely that an exceptional review is triggered at school to assess overall need in the September or October at the start of the school year. Nevertheless, don't let this put you off.

Another piece of advice is to find out what the existing SNA allocation is for your school. It is usually provided as a decimal, for example 4.5. This means that the School's Board of Management are funded for 4.5 SNAs in the school. So assuming the SENCo agrees that your child requires full time SNA support (and most children with FASD will require this) then using this example, that number should increase to 5.5. The NCSE does not allocate SNAs on a ring-fenced basis. The NCSE allocates funding to the School Board of Management, and then steps away. It is then up to the Board of Management to determine which children the SNA is allocated to and for how many hours. Often you will find there are significantly more children that need an SNA than there is funding provision for, so you will need to keep a watchful eye on any exceptional reviews that take place as new children with additional educational needs join the school.