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FASD: from diagnosis to managing school, NDIS and living with this groundhog day no blame disability

Fetal Alcohol Spectrum Disorder (FASD) with Vicki Skelley - Recording

00:00 - Start 01:20 - FASD is the no blame disorder 03:08 - Living with FASD is like groundhog day everyday 05:37 - FASD and school is challenging 12:15 - Montessori school worked well in primary school 17:02 - High school isn't safe so home schooling was the best choice for life skills development 20:06 - Therapy that helps 29:17 - Food additives 33:00 - Food choices and building life skills 36:44 - Medications need to be trialled at home 41:46 - Behaviour, self esteem and living life to the fullest 47:25 - Look at the disability and what causes the behaviour and modify your approach 50:30 - Diagnosis and testing process 59:25 - Advocating in schools and for NDIS 1:03:00 - Submit a carers impact statement from your worst day 1:04:25 - Resources to access

Fetal Alcohol Spectrum Disorder with Vicki Skelley - Transcript

This is Sonia Wagner, representing PCA Families in one of our recordings that capture lived experience and best practice research-based learning that assist kinship, permanent and adoptive parents/carers in supporting young people. PCA Families has a zero tolerance of child abuse. I would like to acknowledge the traditional custodians of the land on which we meet and pay respect to elders past and present and express our intention to move together to a place of justice and partnership.

Today we are discussing Fetal Alcohol Spectrum Disorder with Vicki Skelley. Vicki is a permanent carer who has 11 years lived experience of FASD with her granddaughter who will be turning 13 years old soon. 

Vicki’s granddaughter also has Autism Spectrum Disorder (ASD), Sensory Processing Disorder (SPD), Attention Deficit Hyperactivity Disorder, Specific Learning Disability (SLD), Development Coordination Disorder (DCD) and dyspraxia, dyslexia – all of which are hidden disabilities - she looks like any other child on the outside.

Vicki has embraced lots of therapists and other supports including psychologists, a speech therapist, occupational therapist, art therapist, music therapist and physiotherapist.

So she has lots of lived experience to share and some wisdom to impart.

01:20 What is FASD?

FASD is Fetal Alcohol Spectrum Disorder which is caused when the child is in the womb due to alcohol exposure – the mother drinking alcohol. The brain and the nervous system starts developing 3-6 weeks into the pregnancy. So it could be that the mother could drink then and it develops into FASD. So the mother may not necessarily drink the whole way through. 

It’s called the no blame disability because a lot of women could be drinking in the first 4 to 6 weeks and often you don’t find out you are pregnant until 6-8 weeks where the damage is already done.

03:08 What is it like for a child with FASD?

FASD is a full body disability. Not every child has the same damage done. It affects their daily life, their motor skills, their physical health, their learning memory, communication, emotional n regulation, social skills. Its brain damage and full body disability. Some children have facial features but that’s only about 6% of cases. The majority you wouldn’t know because they don’t have the facial features.  It can take a very long time to work it out. The simplest way to describe it is its like a lightbulb. Some days the lightbulb is shining bright and its ready to go. Other days its like a loose wire in the light flickering on and off. On other days its completely off. A bit like groundhog day because she doesn’t have a memory so its like resetting every day. You don’t know what you are going to get on any day.

05:37 What is your experience of school for a child with FASD? Mainstream school, private school and home schooling?

My granddaughter wasn’t diagnosed until she was 9 so she had already been through a fair bit of kinder and school. She had previously been diagnosed with ADHD and had learning disabilities identified at kinder, in addition to sensory and social matters. So by the time my granddaughter had already been to school, I didn’t have all the information about all these things and the schooling was really hard for her.

She was probably labelled as the child that was disruptive, not paying attention, trying to mask and go under the radar, socially immature as most with FASD are 5 years behind socially.

We did mainstream up until the end of Grade 4.  Once I got the diagnosis in Grade 4 I came armed with a lot of information to the school at the end of Grade 4. It was very much like the ASD diagnosis we had prior. Keep things the same, no change. Many of those suggestions were don’t make change. That would go out the window if there was an emergency teacher. She was in a low maths class so she saw a different teacher for maths. That maths teacher couldn’t get her head around the FASD concept and would come up to me and say what’s wrong with your GD today. She knew her timetable last week but today she doesn’t. Why is she lying to me? She couldn’t get her head around the FASD.  I would have to remind them to read her report and understand this is part of her disability. Groundhog day.

So we didn’t get a lot of support in mainstream schools. Also the Victorian education department don’t recognise FASD as a disability. Only the South Australian education department do – the other states and territories don’t. So it was a lot of effort on my part. Hopefully that will change soon. I don’t understand why one state has trained staff. So it was a lot of training on my behalf for mainstream school.

We had an Individual Learning Plan (ILP) that I would hold the school to.

You can contact your regional education department and they have a disability advocate that can talk with the school and attend meetings.

But really she needed an aide and she couldn’t get an aide provided by the school under FASD.

When it got to the teacher calling me and saying Im not going to be at school today you may be better off leaving her at home. That was lovely of her but not how things should work when my child is having meltdowns spending half the night awake because she hated school in the end and she had a lot of time off maybe attending 50%. That’s when I looked at what is my next option as I cant keep forcing my unhappy child into school. With FASD they do suffer with depression as well as they don’t fit in. As they get older they start to realise they are different and don’t fit in.

She doesn’t have an intellectual disability so that door was shut. You can’t attend a special ed school unless you score 69 or under with an intellectual disability.

12:15 Montessori worked well

So that was when I looked at the next option which was Montessori learning.  Monetssori is very visual and they cater for a lot of children that may be a little bit outside the square. Every child has an individual learning program for each child and they have an aide in each room. They have a wellbeing program. They look at the world and how everything is connected, gardens, chooks and very free based. Children got to choose how best they were feeling and when they would do their subjects. You may not feel like doing maths first thing in the morning. So that was Grade 5 when we started the Montessori journey. She was skipping into school and loving it and we had a teacher that had taught a FASD child before. But then lockdown started which was home learning.

While Montessori were absolutely fabulous during lockdown, it wasn’t the same as what we were hoping for. We went into Grade 6 at Montessori with a new teacher who was new to the school. They had never taught Montessori and they had only ever taught secondary college. I went armed with all my FASD information for her. She said she can get my child from a Grade 3 level of maths and English to a Grade 6 level by the end of the year. I thought this is fantastic. But I kept saying but you have read all the reports and you have been on the FASD website. But obviously that didn’t last long. She tried to make a lot of changes. My child was no longer allowed to wear no socks and shoes. She had to wear shoes all the time. She left it up to the children where they sat every day whereas my child would need the same spot. So there were a lot of meltdowns and it didn’t go well. Lots of meetings including our team of therapists involved in the school.

By then it was half way through the year and more lockdowns and I had to make decision about high school. Montessori offered another year but she didn’t want to do that because the other kids would know. But she just wanted to be normal.

17:02 Home schooling

I couldn’t access a high school to support her.  There was no way she could have a locker and go to multiple classrooms and deal with multiple teachers and have a good day. And then deal with peers where she would be an easy target and do whatever a friend asks her to do. She would be in danger and it wouldn’t end well. So that was when I decided that home schooling would be the way to go from a safety perspective.

We don’t do maths and English in the conventional way. We work on life skills to help her to be independent in the future. I don’t believe she will ever live on her own. But maybe in a group setting she may be able to. So we work on cooking, measurements, safety.

The program isn’t fixed. You can choose what you do its pretty flexible. I had to apply through the Education Department to home school. You have to be approved for it. It’s a pretty quick easy process. You write down what you think you will be dong, I put down life skills pretty much for everything. I got an exemption for language because she doesn’t understand English let alone another language. You connect in with the HEN (home education network) group. We do some of the social activities. They meet every Tuesday in our area locally so we can attend those.

I also moved all her therapists to during the day so that makes our home schooling easier with less driving after school or on weekends.

20:06 What do you do as a parent or carer to help a child with FASD? Therapy!

We have a lot of therapists.  Sometimes people think you can get therapied out. Maybe you can. But my team of therapists that I have surrounded around my granddaughter, we work as a team and we don’t have a set program. We work on what is happening today or how she is feeling today because the big thing is depression. So we work to her capabilities.

We have two psychologists that we see fortnightly alternately. We see one face to face with a therapy dog just to talk or to help with depression.  The other psychologist is the one that originally had her diagnosed and put her forward. She is in Shepparton unfortunately so we Zoom with her. We do speech fortnightly and she has been on board for 3 years in our team. She works on social interactions. We work through a series of books that she suggested on social skills. Reading between the lines because people say things but may have hidden meanings so reading peoples facial expressions may convey to you what people are thinking and that helps with how to respond to that. For example I’ve taught my granddaughter we don’t always have to tell the truth. Sometimes we need to fluff around the truth. Rather than telling someone they look terrible in a pair of jeans. For her she just says things as they are.

We have an OT that comes to the house as well.  She used to go to the Montessori school as well. She works on a battery and that gets colored in with different colours indicating where her energy is.  They may come across as lazy and lethargic and they are more than happy to sit on the couch all day. So its constant motivation. We are currently working on pairing up another child in our area. We have done one session with the two fo them together. We are going to alternate one week at her house one week at our house run by the OT to try and bring social connection.  Hopefully that will work out. My granddaughter was pretty closed shop to it as its easier for her to look for the negative rather than the positive.

She also has art therapy once a fortnight in the home working on emotions.   She loves getting messy and art. Sometimes Ill come in the study and there will be paint sprayed everywhere. She can just be free and express herself. Sometimes they work with clay. There are not rules around it its just letting yourself go.

We do music therapy which is singing lessons. Her singing teacher which she has had for about three years who we also met at Montessori also does meditation and yoga. So she teaches her breathing techniques. Instead of shallow breathing you breathe from the stomach deep down. Luckily my granddaughter can actually sing and she is an awesome singer actually but she just doesn’t want to sing in public. The singing teacher has just got a Diploma in Hypnotherapy for motivation so we may start that program with her as well. We do that weekly in the home each week.

We also go to physio weekly so that’s to help with her coordinations disorder and her core body strength because she is very tall as well. A bit like ASD they can have body movement problems.

We also have an assistance dog so we have dog training each week.

29:17 What about food and food additives?

Definitely removed some additives. My granddaughters first diagnosis was ADHD. Its quite well known that with ADHD certain food colorings like green, red or blue can often set them off to be a bit hyper.

Now that I have the FASD diagnosis I see the main focus as FASD as her main diagnosis and ASD, ADHD etc as secondary. Some of them cross over. Does she have ADHD? I don’t know? She has FASD which is a whole body disability. She definitely has a reaction to food colourings and high sugar items. There are definitely a lot of additives for children with ADHD that you should avoid. I read a lot of labels over the years. You get to know what affects your child. Usually that child will crave that food and wait 20 minutes or half an hour to see abusive, teary, smashing walls, being disruptive. Try removing that food for a few days to see if you still have the same reaction. It’s an elimination process. One day my granddaughter got picked up and taken to a party. They took her to McDonalds and gave her coke. She cant have coke syrup because it sets her off the plant and she was like that at the party and then after the up you get the meltdown. In those situations all I can do is give her lots of water to get it out of her system.

33:00 Choices

Now that she is getting older, if she does have something behind my back that she knows she shouldn’t have and she comes home and is crying and havin a meltdown then we will need to have that conversation again. Its really hard when other kids can have these things and they are fine. As she gets older you have to put the choices back in there so they can make the choices for themselves. I hate coke to be honest. I started buying bottles of it and allowed it. I thought there is a day that’s going to come for her to make the choice. She doesn’t have as bad a reaction to bottled coke as she does to coke syrup.  I would allow her to have a drink of coke in the middle of the day so then I’m teaching her to make those choices that yes not a good idea to have coke at nighttime at 8pm at night.  Otherwise you put it up there on a pedestal and they will run riot one day. They might get abusive and the police might come along and cart your child off. They might end up in a psyche ward.  I’m teaching her choices and they have to be hers. You know you are going to feel like this after you have a certain thing. Are you happy to get this knowing how you will feel. That’s much harder when they are younger and you try and remove as much of that as possible. This is all safety that I am working towards. Im not always going to be there walking behind her so she needs to learn to make some decisions about herself. She knows how bad she feels. She is managing coke quite well within the house.

36:44 What about medications?

Her first diagnosis was ADHD at 6 or 7 years old. Paeds put her on ritalin. It was meant to fix her at school. I wasn’t open to it but we did a trial once on the weekend. I wasn’t going to pop some pills and send her off to school. She popped some pills and it didn’t work. She was walking around me in circles going Nanny, Nanny, Nanny please help me I cant stop. Any medication you try you should always try in your own environment anyways as you don’t really know how your child is going to react. And the teacher has other things going on anyway. So that confirmed for me she has some aspects of ADHD but the ADHD medication doesn’t work for her so its not an exact fit. She takes Melatonin to help her sleep. We also have a sound machine. Sleep is a big problem for children with FASD. We have this sound machine which lasts 8 hours with about 18 different sounds like a fan, the ocean, rain and others. I bought it off a sensory disability website.  The best thing! That’s what you do. Trial and error.

I give her iron to help with brain function. That’s it for medications.

Otherwise we have relaxation sleep sprays for the pillow.

She used to listen to a meditation tape at night but now she prefers the sleep machine.

Paeds have wanted her to go onto anti depression medication. Im not willing to do that yet. Once I do that you cant come back from that. Its life long. So I am hanging off. Probably there will come a day that we will have to go onto anti-depressants. But I would like at as many feel good things until then.

41:46 How do you help their behaviour, self-esteem and enjoying life to the fullest?

I have always provided her with a calm environment. She has a four-poster bed with curtains around. We have fairy lights and different things that make patterns on the roof. So she has that calm, safe space for a meltdown. So I will say maybe you need to go spend some time in your room calming down and then we can talk about what’s going on. Sometimes its like dealing with a 3yo because they get themselves so worked up they don’t want to hear you and they aren’t in the right mindset anyway. Its better off for them to be in a sensory environment that calms them.

When she was smaller she had a tent with cushions and her favourite toys.

I keep her off certain foods or because she is good at stashing things, I did investigate locking things in cupboards and the fridge. But I haven’t gone down that pathway. At some point you have to allow them to be responsible for themselves. I’m working on daily teaching them to manage those decisions. I just remove the stashes every day. I keep her room clean. I clean her room once or twice a day because with FASD they only go forward they don’t go backwards.  So she has the draw open and she doesn’t have a sense of what is happening around her so she will trip over and smash her leg or knee or something. She will change her clothes multiple times a day. I hang them up because is she puts her things in the wash it will be all the clothes not just the dirty one. I see other parents punishing their children for these things. For myself you can’t punish the child because their mind is in disarray. Everything is in a mess in their mind. Its much easier for me to go in there everyday and that provides her with a space that isn’t in a mess. If I keep teaching her it will eventually happen. It might take 8 years. Now I write a list. You cant just say to a child with FASD go clean your room, put your shoes on, brush your teeth, brush your hair, go to the toilet, shut the bathroom door and take the dog out for a wee. You would be lucky to get one thing done. Now I write a daily list of what order it needs to be done in. Now I have her making her bed. It might not be the best but its made. She shuts her draw and cupboard. She puts on her shoes and now she can do up her shoelaces because that’s the coordination and thinking. Its very hard for a kid with FASD. Groundhog day and same thing every day until one little thing will happen and they know how to do what they need to do. It just becomes habit.

47:25 Look at the disability and what causes the behaviour

It doesn’t help with yelling at the child either. I look at the disability. What part of the disability has this behaviour come from. When you can shift your mindset you will be surprised what comes. The other thing is it’s a bit like ASD you try and keep everything the same. If there is going to be a change like moving house or going on holiday. You just need to put as much pre warning into it, even on the whiteboard crossing off the days, and talk every day about the preparation of what is going to happen. Take your comfort staff with you so you take some comforts from home with you. I also use a visual clock which has a timer on it. IF there is something I want her to do it shows you the red part going down and when the buzzer goes off this is what you need to do, whether its getting off the technology or something else. She has no concept of time or what day it is or what the weather is like. Every day is it hot or cold today? Is it still winter today? She doesn’t feel hot or cold so she could be walking around in shorts in winter and in trackies in summer. So if she isn’t in my care someone else needs to watch that so she doesn’t get dizzy or dehydrated.

50:30 Process of getting diagnosed and the testing required for FASD – the WISC V and reports?

When it does becomes quite noticeable that your child has some form of disability, usually someone would have said something to you or you would be noticing certain behaviours. I already knew my granddaughter had already come from early childhood trauma. It was easy to label it in one box. She was with me from 22 months so we just worked on the early childhood trauma which was psychologists obviously and then moved to some other diagnosis such as ADHD because of behaviours and ASD. I was lucky to get into a psychologist in Shepparton who was opening the first FASD clinic in Victoria out of the hospital. My granddaughter was the first one to go through that clinic. Prior to attending that appointment you need to fill in a heap of paperwork. We had to have some confirmation that her mother had drunk alcohol during pregnancy. I knew my granddaughter had been born drug and alcohol addicted. I knew that the mother had drunk nearly every day and  had taken ice and pills and whatever. You need to provide details of where the child was born so that the hospital can obtain records. 

The FASD clinic was a full day 9am to 3.30pm.

I’m not sure what the process is if you don’t know the child’s history or have access to the bio mum to admit that. There are a lot of other markers. It was a verbal from me and that was accepted. You don’t need a signed confession or anything.

We went along for the full day of testing but it was pretty good.

There is a whole team. The paeds flew in from Perth and Queensland because that’s where the FASD hubs were.  We saw the paeds and they did the measurements to see if there were any facial features. Basically dissected the body from head to toe. Checking over everything. Then she had an appointment with a psychologist and I saw a psychologist separately. Then we had speech. We stopped for lunch with a hospital lunch.  Then we did the full day of testing.

There was another team of about 20 people in another room.

They obviously did that right through lunchtime because in the afternoon we did some other things.

It took about a month where I then went back on my own to get the report.

I met with the paeds and a few other professionals. They had diagnosed my granddaughter with FASD. They went through the report in depth page by page and explained everything. It was extremely in depth.

You can take the report into the school environment. There was a lot of good stuff including the one line that is they will require the full support of NDIS.  That was when I applied for NDIS because I applied with ADHD and we never got there. I hadn’t thought about it before that.

The one thing that broke my heart in the report was reading it was highly unlikely she would make it to high school. I remember reading that thinking that’s not going to happen. I now understand why. Having the FASD diagnosis was like the missing piece of the puzzle. It all fitted once I started doing my research and making accommodations.

And yes you need the WISC V test which can be done through a psychologist because that gives them the testing that they need to do measures against the FASD. Most people if they have an ASD diagnosis they probably will have had a WISC V test done anyway.

59:25 How do you advocate for and what do you advocate for in schools for children with FASD with NDIS?

It is neurological. 80% of children diagnosed with FASD have been diagnosed with ADHD prior. That is perhaps professionals getting to terms with FASD. It is immediately covered with NDIS and you can apply straight away. The line from the FASD reports should be put in. The line that this they will require full support from NDIS, lifelong support, no medication that will fix it.  It’s a permanent disability. There will always be therapists. Its just teaching them to be independent.  You put in for everything because it is a full body disability.  They are trying to get rid of psychologists so don’t go with the depressions content go with the day to day needs. They do cover OT, speech, music therapy, art therapy.  Keep pushing for emotional regulation.  Also we get the physio covered because that is about poor body movement. 

1:03:00 Carers impact statement on worst day

I strongly suggest that anyone that applies needs to do a carers impact statement on your worst day with your child. We don’t want to think of their worst day but from an NDIS perspective you need more support and funding. If you are not happy with it just put in for a review. They aren’t going to take it off you. They will give you more. Don’t be scared of them. They are a Government department but don’t be scared of them as you are just fighting for what your child needs. Its not their fault. This service is there for that.

1:04:25 Any other things to discuss or resources to access?

Most children are in mainstream school so hold your school accountable if they are going to that school and being in their care all those hours. Most schools think it must be something happening at home. Go in armed and give them handouts. You are their advocate and you know them best and the school needs to accommodate that. Make sure you have regular meetings with the school and the principal, year in year out. Sometimes teachers go renegade. Make sure you have that individual learning program or behaviour support. Back it up with an email – as per….the school will do this. You need that to come back to when you check in in a months time. If you do get the disability worker involved from the education department make sure it  happens. Don’t be scared to home school if you feel that it is in your childs interest from a mental health perspective. If you are not happy with the professionals change. If it doesn’t feel right to you change. I have to refer back to an Speech Therapist she had a session with one time. The speech said she doesn’t need speech.  Well that’s not true. But how many carers would say ok this professional has told me she doesn’t need speech. So if you don’t think its right it probably isn’t right. It’s the same as when you look out for the safety of your young person. Well they touched me wrong or were saying something that is inappropriate. Don’t be scared to change or challenge therapists. If you feel your diagnosis doesn’t fit keep searching or asking. If you think your child has FASD, which is bigger than ASD, get on a wait list and get diagnosed.

Thankyou. To anyone making the time to listen to this recording, thankyou for giving up your valuable time for the benefit of the young people in your life. Until next time have an amazing week.


NOFASD  - No FASD Australia

HEN – Home Education Network

VRQA – Victorian Registration & Qualifications Authority